Journal History
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Saturday, October 25, 2008 8:48 AM CDT
Wow, the time sure has flown by. I am sorry that it takes so long between updates, but really, not too much has been going on. Today is Lucas's 9th Birthday!!! He is so excited. He wants a scooter and of course, a go cart. I think the go cart will have to wait until mom and dad have a little more money in their pockets.
On the medical side, Lucas's ferritin level has gone from over 3,000 to 631!!! That is the lowest that it has been in years! We are so happy that the phlebotomy is working. He still has to go in once a month until they think that it will be ok to stop. A normal ferritin level is between 7 and 142 (I could be off by a little bit, but that is pretty close to normal range.)
Well, I am heading out to bring the boys to their weekly bowling tournament. They are both doing very well.
Thanks again for checking in and I will update with any changes.
Wednesday, July 16, 2008 8:01 AM CDT
Yesterday at 3:50 a.m. my grandma Bev was taken from us. She died peacefully at the age of 75. We all love and miss her dearly. It still does not seem possible that she is gone. I had taken the boys up to see her on Monday night (7/14/08). Before taking them I told them that grandma hasn't been remembering names, but when Lucas walked up to her bed she said, "hi Lucas". He cried for about 20 minutes before I could settle him down. That meant more to him than I ever thought possible.
Her liver was full of cancer and they think that it was spread from the lung. Grandma did not know that she had cancer and I think that was for the best. This all happened so fast. She went in because she was weak and before we knew it she was so full of toxins from the liver not functioning properly that she couldn't speak clearly most of the time and her memory was not the same either at times. Please say a prayer for my family. My dad is having a very tough time with this...as expected. My grandma was a wonderful, giving, thoughtful person. She was always there when we needed someone to talk to.
We love and miss you so much grandma. You will never be forgotten.
Krissy (that's what she called me)
Monday, June 30, 2008 9:58 PM CDT
Wow...time sure does fly! I just wanted to let all of you know that everything is going great. Lucas is doing well and having a great summer. The phlebotomy is working well and his ferritins (level of iron in his liver) are on their way down. A normal ferritin level is anywhere from 7-143 and Lucas's was at over 3,000 over a year ago. This month they were down to 1,090...the lowest they have been in years. They are only expected to go down more every month. Since he is not having blood transfusions, there is no reason to think that they will go up again. Since that is the reason that his count went up in the first place.
I hope everyone is doing great as well. We would love to hear from you, so if you have a minute...stop and check out our guestbook even if just to say "hi".
Thank you to everyone who still checks in with us.
***Please say a prayer for my grandmother. Her liver is full of cancer and it is only a matter of days before she enters heaven. We love you grandma.***
Kristin
Thursday, October 25, 2007 8:59 PM CDT
I am so sorry that it has taken me so long to update. I can't believe that it has been almost 3 months.
Well, first of all...today is Lucas's 8th birthday! We are going to have a party for him tomorrow. Today we went and he got to pick out a new bike. That's the only present that he wanted....I know, it's a wierd time of the year to buy a bike, but that's what he wanted. He is telling everyone else that he wants money....yep, typical male!
We decided not to go through with the hormone testing. Why go through the testing when we are not going to do the hormone injections? There is no way that we are going to risk having the tumor grow. Even though they told us that it is all dead cells, we are not ready to take such a big risk. I would rather have him short and healthy then not have him here at all. Besides, tests proved that he is making all of the right hormones, just maybe not enough. So we know that he is growing, only at a slower rate.
Lucas is still going through the phlebotomy every month. For several months his iron was going down pretty fast, but last month it went up just a little bit. That has happened before and then the next month it went down quite a bit, so we're not worried. His liver functions is actually going down a lot. It's getting real close to the normal levels. That is one of the most important things and we are very happy about that.
Other than that, things are going very well. Lucas is doing great and having a great school year. 2nd grade is going well for him. In January we are taking him in for a neuro-psychology test. This will help his teachers know what things he will need extra help for. The chemo did some damage on his short term memory. Even though there is so much that the chemo has damaged, it has given me a lifetime with my little boy and that is what matters most.
Thank you all for checking in with us. Please sign in the guestbook.
Kristin
Sunday, July 29, 2007 1:53 PM CDT
Lucas had his surgery on Friday and everything went well. The doctor was able to bring both testicles down without any problems. He said that they were not up as high as he had originally thought, but they were very small. Not shriveled, but just small. Probably damage that was caused by the chemo. He also said that we will not be able to tell until he is going through puberty, probably in about 5-7 years, whether or not he is going to be able to have children when he gets older.
I have to tell you the cutest story. On Saturday morning when Lucas woke up, he was in the bathroom for a very long time. I went in to check on him and he was standing there looking down at his scrotum. After I asked him what he was doing, he looked at me and asked, "is this really what it looks like to have balls?". I tried not to laugh and told him that is exactly what it is supposed to look like. He proceeded to bend over looking at them. After a couple times of saying "wow", he looked back up at me and said, "it sure is nice to have them home again". This time I could not help but to laugh. He sure does come up with some crazy stuff sometimes. I'm glad that he's able to have a sense of humor about all of this.
Other than that he is doing very well. He is still a little sore and is restricted from any rough play for 3 weeks. He isn't very happy about that seeing as though he thought he could come home and run through the sprinkler. He is able to shower, but can not soak the incisions in the bathtub. He can not ride a bike or jump and run around either. Most of the things that Lucas loves to do. Either way, I am just happy that this surgery is over with. There was a chance that he could only do one side and would have to do the other in 6 months. Thank God that didn't happen.
Thank you all for checking in with us. I will update again with any changes. He will be having his growth hormone test done at the end of August, so I will let you know of those results as soon as I get them.
Kristin
Monday, July 23, 2007 12:51 AM CDT
Well, Friday is almost here. Just when you think that surgery is not going to have to happen again. I am dreading it. I know that it is a very simple surgery compared to what he has been through in the past, but I hate the fact of him having to be put under again. For those of you who know me, you know that this is one of my worst fears. I don't like watching my baby fall asleep like that. He always fights it, and it drains every bit of courage out of me. It's so hard to be strong for him when it scares me to death. Maybe it's because I've never been put under myself before and I don't really know what it's like. Believe me, if I could take his place....I would....in a heartbeat. Please pray that all goes well on Friday, and that the doctor can save both testicles.
We took Lucas up to the U of M at 8 a.m. on Friday for his growth test and found out that he wasn't supposed to eat or drink anything for 8 hours before the test. Lucas woke up and had a small glass of milk at 4:30 a.m. After arriving at the hospital, we found out that he can't have anything in his stomach. It sure would have been nice to know this in advance. Especially since we live 1 1/2 hours from the hospital. Needless to say, his appointment was rescheduled for August 29th. We had the option of waiting until 12:30, 8 hours after the milk was drank, but the test takes 4 hours and he wouldn't have been able to eat or drink anything until after 4:30 in the afternoon. He was hungry on the way to the hospital, so we didn't think that was a very good idea.
Other than that, he is doing very well. Of course, getting a lot of fishing in. He is also catching a lot of frogs over at the pond by our house. He has had close to 10 albino frogs already. They are really neat, but we bring them back after a few days so that they don't die. Last night we brought some back and ended up catching some tree frogs. I thought they would be more fun for him to play with since they don't jump as far as those leopard frogs. That way he can catch them if they get away. Allthough, he has gotten very fast and they have to work pretty hard to jump away from him. He sure does love the outdoors. I remember when he was so sick and in the hospital and was first able to go outside in the wheelchair. He was so happy. It was almost like he was a different kid once that outside door opened. If he could live outside, he would. He has enough stories that he could probably start his own "outdoors" show when he grows up.
I will update after the surgery on Friday to let everyone know how he is doing. Please remember to say a prayer for him. I know that everything will go well, but it never hurts to have too many people praying for you.
Kristin
Wednesday, May 30, 2007 6:01 PM CDT
Well, Lucas isn't going to have surgery tomorrow after all. I took him in for his pre-op physical on Friday and found out that he has a slight pneumonia. Other than a slight cough, he wasn't even sick. I couldn't believe it. I guess it was just the start. Luckily we caught it early. The surgery has been rescheduled for July 27th.
On July 20th Lucas is going to have the growth hormone testing done. That will be an all day deal. They will inject him with 2 different medications and check his blood every 1/2 hour. We were told that if everything checks out okay then we might want to give him some growth hormones anyways just to give him a little boost. After talking to the doctor, we have a lot to think about. She told us that growth hormones do not cause cancer or tumors, but they will make anything that is inside of him grow also. Not knowing if the small amount of dead or calcified tumor will grow, we are scared to death. I guess we just have a lot of questions before we make any big decisions. We do know that he is making all of the hormones needed to grow, but he might not be making enough. That could be due to the chemo and radiation.
One good thing that we found out at the urologist a couple weeks ago was that the doctor was finally able to feel Lucas's testicles. They were up pretty high, but he said that he does feel a lot better going into this surgery knowing where they are. He did sound a lot more confident after that appointment which also made us feel a lot better. He said that he has had it happen where he sedates a child, and after they fall asleep, the muscles relax and allow him to push the testicles down without doing surgery. That would be a dream come true if that happened with Lucas. I'm sure if they are up as high as he says, odds are he won't be able to do that on both sides. I guess we won't know anything until the 27th. Please pray for the best.
Thank you to everyone for checking in on us. I will let you know if there are any changes.
Kristin
Saturday, April 28, 2007 8:50 PM CDT
Well...it's been a while, but that's not to say that nothing is going on. Of course there's not any horrible news, but there are some issues with Lucas's health that we are dealing with.
A few weeks ago I noticed that Lucas's testicles were gone. Yes gone, they just disappeared. We took him to a urologist and he said that he couldn't even feel them. He said that they could have went into his abdomen and are behind some muscles and that is why he is unable to find them. He is not, however, able to explain why they went up there. It is possible that the chemo or radiation had damaged or softened some of the surrounding tissue. The only way to tell is by doing surgery. He is not going to guarantee that he can save one or both of them. If he has to cut the main blood vessel then it will cut off blood supply to both. Hopefully it will not come to that. He is going to do what he can to save at least one. Lucas came home from school one day and told me that he told his teacher and his friends that he was going to the doctor because he didn't have any balls. After I called his teacher to explain, I explained to him that some things he doesn't need to tell his friends. And not only that, but he then had to learn the word testicles. His explanation just wasn't so nice. Of course it was funny, but I didn't want him to know that. Then he asked me what will happen if the doctor can't find them. After all that he has been through, I have to be totally honest with him. I don't want to keep anything from him unless it is totally necessary. So I explained that if the dr. can't find them, then he might not be able to have kids when he gets older. I was not expecting the reaction that I received. He got real upset and almost started to cry. He told me that he wants kids and he wants to be a dad when he is big. I explained that there are other ways to have kids and we will know more after the surger. Not thinking that this conversation would be repeated, Lucas went to school and told a boy that he might not be able to have kids. The boy then told Lucas that boys can't have kids. So what was I to say? I told him that a baby needs a mom and dad, but yes he was right...a mom can only have the baby in her tummy. Boy was that a hard one to explain! His surgery is scheduled for May 31st. It will be an outpatient surgery. Still, not one that any of us are looking forward to.
Also in May, Lucas has to do some growth hormone testing. One general blood test and bone scan were done and they showed nothing suspicious. His bone growth looked normal. Next they will have to do specific hormone testing. I'm not exactly sure what that consists of, but it sounds like they will be injecting him with certain hormones and then testing his blood. It sounds like it's going to be an all day thing. Hopefully they can get this taken care of. Lucas is only in the 5th or 10th percentile for his age. (We were told the 10th, but paperwork showed the 5th, so we are not sure which one it is.)
May sure is going to be a busy month. Lucas has several doctors appointments. The Phlebotomy is going very well. His blood is returning to normal quite fast and his liver functions went down, which was a surprise to the doctors. They didn't think it would happen that fast. His iron level has not changed yet, but it wasn't expected to this soon. It will take a while before we see any change in that. Who knows, maybe he will prove them wrong again and that will come down fast too. I pray that it will.
May is not only a time of doctors appointments, but on the 26th, Josh turns 14. I can't believe how fast he is growing up. He is 5 ft. 8.5 inches. Can you believe he is 3 inches taller than me already?!!! He has decided to join baseball this year. For those of you that know him well, you know that his first and favorite sport is basketball. I am happy that he has decided to try something new. He is actually very good for someone that has never played before. Well, besides playing catch with a few friends. The coach and other players can't believe that he has never played on an organized team. I am excited to start watching tournaments. Lucas is going to be a bat boy. He even gets his own shirt to wear with his last name on it. I can't wait to take some pictures of the boys together and post them.
Thank you to those of you who still check in with us. I will update after the surgery to let you know how it went. Please pray that they are able to fix his problem.
Kristin
Sunday, February 25, 2007 4:50 PM CST
Well, we tried Exjade (the new medication for Lucas's iron overload), and it didn't go so well. After about 7 days on the medication, Lucas broke out in a severe rash and his face and ear lobes were swelling. His dr. told us to take him to the ER right away where they put him on some sterroids for 3 days. The sterroids gave him muscle cramps which made him very uncomfortable. Because the rash was going away, we stopped giving them to him and things started to get better. Now he is going to start phlebotomy. We will meet with his dr. on March 7th and find out when that will start for sure.
We also met with the growth dr. Lucas did some blood tests and we should get the results back next week to find out if he needs further testing done. If he does need treatment, it sounds like it will be a daily injection given at home. I guess we'll have to see.
Now Lucas has to see a urologist. He has been having accidents once in a while and he says that he doesn't know that he is going. The dr. told us that it could be a problem caused by the chemo and other treatments that he has had. It's possible that he may have lost that feeling. I guess it's just one thing after another lately. Just when we think that things are getting better, we end up having to see a different dr. for another problem. Lucas is getting so tired of all of this, but I just thank God that there are all of these small problems and the cancer is gone. This is all stuff that we can deal with.
I went into the dr. last week and had to have an Echo done. When I went in for my bronchitis, the dr. told me that I have a heart murmur. Luckily, the results came back fine and there are no other problems. She said that there is just a little extra sound in there, but it is nothing to worry about. I later found out that my dad and my sister have the same thing.
A couple of weeks ago my sister found out that my 1 1/2 year old nephew has to have surgery in March. She took him into the dr. and found out that he has a hernia. Problems are just never ending with our family. I just pray that things will start to turn around for us soon.
Thank you all for checking in with us. Please sign in the guestbook even if it is just to say "hi". We love hearing from all of you.
I will let you know if we hear any more news.
~Kristin~
Monday, January 29, 2007 7:27 PM CST
Today we went back up to the U of M to talk with the doctors about starting the new medication for Lucas's "iron overload". He also had his hearing checked since the new medication has a possible side effect of hearing loss. If the doctors notice any changes at all, we are going to stop the medication. He is going to start it tomorrow night. The only other major side effect is nausea. Hopefully since he is on a smaller dose, this won't effect him.
One thing that we did find out today that wasn't the best news, was that he is only in the 10th percentile for his height. This problem was probably caused by the chemo and radiation. Now he has to be seen by another doctor and possibly have to take growth hormones. Just one more thing to add to the list. I guess like the doctor said, "these are things that we can deal with". I just thank God that it isn't cancer. Hopefully this new "exjade" medication will bring his iron count down and he will hit a growth spurt and we won't have to worry about any more.
We found out today that his tubes are still in his ears. A couple weeks ago he had a bad ear ache and there was fluid leaking out of his ear. I took him to the ER and they put him on antibiotics and now it is all cleared up. Things are better now and hopefully only good things come our way.
Thank you for checking in and please sign in the guestbook even if only to say "hi". We still love hearing from you.
I will update with any news.
~Kristin~
Sunday, December 10, 2006 10:40 AM CST
***UPDATE***
12/20/2006
Lucas had his ear tubes put in yesterday (12/19/06) and everything went well. He might have a touch of the flu, but he seems okay today. They checked his blood, but we haven't heard anything back yet. I will let you know how it turns out.
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12/10/2006
I just thought I would let everyone know that we met with the doctor last Wednesday. Lucas's ALT and AST (liver functions) are better, but his ferratins (sorry for the spelling) level has gotten worse. It could be possible that it went up because of the ear infections that he has had. He actually still has one. This is his third one since his birthday in October. We have an appointment to meet with an ear, nose, and throat doctor at the U of M and discuss putting tubes in his ears. When he goes in to have that surgery done, they will re-check his blood counts and decide what to do next. If we decide to go with that new pill (x-jade), he will have to get his hearing tested every month to make sure that there is no damage. From recent studies, the hearing loss that was cause by this medication was only temporary, but none of the patients were children with previous hearing loss. The problem with doing the phlebotomy (taking blood) is that we don't know that his marrow is strong enough to produce more platelets. Right now they are at their highest at over 160,000. We still have a lot of decisions to make.
As of right now, Lucas is doing well and acting like a normal 7 year old. He is getting along allright in school. He would rather stay home, but who can blame him. I would like to stay home from work too, but sometimes we can't always get what we want. He is doing better though now that he is going to a hearing aid teacher and a speech teacher. He is learning more and more every day. Josh is also doing very well. His lowest grade this quarter was an A-. I was so proud of him. He is such a great student and they are both the best sons that a mother could ask for.
Lucas has had some rough nights the past couple of weeks. Every year since our Buddy Addison's death, we have bought a new Batman Hallmark ornament for our tree. Lucas always enjoys helping me put them on and gets so excited every year to get a new one. I don't know if that has something to do with this or not, but there have been a couple of nights where he will just break down crying. After talking with him, I found out that it is because he misses his Buddy Addison. He even told me that he wants to die and go to heaven so that he can see him again. He said that he wants all of us to die and come with him too. Of course that hit me like a ton of bricks. We sat and cried together and talked about our memories of Addison. I explained to him that he wouldn't want Lucas to be sad and that someday we will all be together again soon. I also expained that Addison is without pain and he has no more cancer. He was very happy to hear that. Of course he had a lot of questions for me....some of which even I couldn't answer. Addison will always be a part of his life. He was so special to Lucas and he will never forget his friendship. They were the best of friends.
Thank you all for checking in. Now that I have brought myself to tears again, I should probably get back to some housework. I will update as soon as we find out when Lucas will be getting tubes put in his ears. After that happens, we should also have a decision made about what treatment we are going to go with to get rid of his excess iron.
I hope you all have a "Merry Christmas and a Happy New Year."
With Love,
Kristin and family
Thursday, November 16, 2006 7:19 AM CST
Thank you to everyone who has been checking in with us even though I have not had a chance to update recently.
Lucas has had a rough month. He started out with a cold and then ended up getting an inner ear infection. Finally that cleared up for a day or 2 after his medication was gone and he got another bad ear infection. This poor kid has had so many problems with his ears. I think it is starting to affect his hearing too. We are going to make an appointment for him with the audiologist after he is through with this medication.
We have been so busy with Josh's basketball season and Lucas's swimming lessons. I am running somewhere everyday of the week. Lucas loves his swim lessons. He is doing so well and can just about do it on his own. He loves to go under water and dive for the ring.
Lucas had a nice birthday (October 25th). We didn't do anything special, just us at home, but he got some nice presents and was very happy. I brought home a new kitten for him. We named her Chloe. She is black and white and is quite the little stinker. Lucas loves her so much.
On Halloween Lucas decided to be a Zombie. He was going to be batman again, but changed his mind at the last minute. Don't get me wrong, he still loves batman. We just had to get him a new batman hat and that's still all he wants anything to do with. If our kitten wasn't a girl, he was going to name it batman.
Well, I will update again with any news. We still haven't heard back from the doctors about that new drug. I just called and left a message the other day so hopefully I will hear something soon so we know what we are going to do. I just pray that he goes in for blood work and his counts are back to normal. Please say a prayer for him.
Thanks again for checking in.
Kristin
Monday, September 25, 2006 9:31 AM CDT
We met with the doctors on Thursday about Lucas’s liver biopsy. The test that was done for a genetic disease came back negative. They are calling his condition “iron overload”. This condition was caused by having so many blood transfusions. There is minimal damage to his liver, but there is a lot of iron stored in there that his body should be releasing.
The pill that they were talking about putting him on has a rare side effect of hearing loss. Even though it is a slight risk, we are very nervous about this. The FDA just recently approved this drug about a year ago. Not long enough for me. Lucas has already lost so much of his hearing from the Chemo and all of the medications that he was put on, we don’t want him to lose any more. Of course we only want what is best for him, but we also want to look at every option before we rush into anything. The doctors are going to contact the makers of this drug and get as much information as they can about it to help us make the right decision. There is also a procedure called Phlebotomy (taking his blood once a month) that we could try. The only thing with that is Lucas has had problems with his platelets in the past, and they don’t know that his marrow is strong enough to produce more. We have a lot to think about before making this decision.
One good thing that we did find out is that after stopping the children’s multi-vitamin, Lucas’s ALT, AST, and Phermine levels went down. These are ways of looking at the amount of iron in his blood. The doctors aren’t 100ure that this is the reason that it went down. We might just have to watch his levels for a little while and see what happens. Maybe they will continue to drop on their own. I pray that taking him off of the vitamin was what did the trick and he won’t have to try any new drug or go through any more procedures. That would be a dream come true for all of us.
Thank you all for checking in. I am going to be posting some new pictures soon. I will update right away with our decision. Hopefully we will figure something out soon.
Kristin
Other Neuroblastoma Survivors:
http://www.caringbridge.org/ne/kaitlyn
http://www.caringbridge.org/co/benjaminmason
Tuesday, September 5, 2006 11:18 AM CDT
Well, Lucas had his biopsy on Thursday but we don't get any results for up to 2 weeks. The liver samples have to be sent to the Mayo.
It was a hard day. Lucas was on his way back to the OR with Dave to get sedated. He gave me a big hug before he went back and he wouldn't let go. He got really nervous and started crying. Of course I started crying then too and had just as much trouble letting go of him.
This time Lucas decided that he wanted to be put under with a mask on and not an IV. This I didn't understand because he isn't scared of needles any more and he had to have an IV anyways. I guess he just thought it would be easier. Boy was that a mistake. They all had to hold him down and he was fighting the whole time. When we got called back to the recovery room to see him after the procedure, he woke up and was very angry. He was trying to take the monitors off and trying to pull out his IV. The nurse had to give him some Versed and some pain medication to calm him down. One of the nurses told us that he even woke up in the OR and they had to give him some more sedation. It was so weird because before he went in he kept asking me....."what if I can't go to sleep, and... what if I wake up?" I just told him that everything was going to be okay and that wouldn't happen. Who would have guessed that he would have really woke up or had so much trouble going to sleep. It's almost like he had that in his mind and that is what he was going to do.
I am just very thankful that all in all, everything went allright. We had to stay for 4 hours after the biopsy so that he could be watched. He did very well and was able to go home the same day. He had to take it easy for a couple of days, but is doing great and back to his normal self again.
Today was his first day of school. I am anxious to get back home to see how it went. Both of the boys were very excited to go back.
I will let everyone know what the results are when we get them. It could be anytime between now and the next couple of weeks. They just weren't sure exactly how long it might take.
Thank you for checking in. It really means a lot.
Kristin
Tuesday, August 15, 2006 2:39 PM CDT
***UPDATE 8/28/06***
We received a phone call from the doctors on Friday that Lucas's Hepatitis test came back negative.
His ultrasound looked good and the blood flow to and from the liver looked good. There was no visible damage, but if the iron is left collecting in his liver, then he could eventually have major problems. They have scheduled a liver biopsy for this Thursday (8/31) at 7:45 a.m. They are going to do a genetics test at the same time to test for a gene called Hemacromatosis. If this test comes back positive then both Dave and I will have to be tested also. As of right now, they are calling what he has, "Iron Overload Syndrom". Either way, there are a few different treatments that they can do for him. We will be discussing which one he will need after the results of the biopsy come back.
He shouldn't have to stay in the hospital after the biopsy, unless the radiologist feels that he needs to be observed overnight.
I will update as soon as we get any news.
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I'm sorry again that it has taken me so long to update. There is so much going on this summer and I'm sure you can all understand how busy it can be.
Lucas went in on Monday (August 7th) for his last CT scan. The main spot still looked the same, but we were told that he has an enlarged lower colon and his liver function test came back 4 times higher than the normal range. I received a call today from his doctor saying that they are not worried about the enlarged colon because they think it could be from a virus or possibly from the treatments that he has had done in the past. However, they are concerned about his liver functions. We have an appointment on Friday for an ultrasound of his liver and a lot of blood work to be done. They are going to test for Hepatitis C and antibodies that could be attacking his liver. They aren't going to stop until they figure this out. We will meet with another doctor next Tuesday to find out the results and talk about what the next step is.
I just pray that this is nothing major. The doctors did say that they do not think that it is cancer. Nothing is showing up on the CT scan. It could possibly be scar tissue that is blocking the blood flow to or from the liver or damage done to the liver by the chemo. His liver functions have always been high, but the doctors thought that over time it would get better on its own after his body healed and returned to normal. Hopefully he won't have to have any major surgery because of this. I have been sick to my stomach all day worrying about what this might mean. I just don't want to see him go through anything else. He has been through so much already. The weird thing is, he hasn't been in any pain. You would think that if he had Hepatitis C, he would be hurting. He hasn't had any pain since he was treated for acid reflux. I just don't understand this.
Please say a prayer for our little buddy. None of us want to see him go through any more surgeries. I will update as soon as we get results.
Thank you for your prayers,
Kristin
Thursday, April 13, 2006 10:06 PM CDT
Sorry it has been so long again since I have updated. Lucas has had several ear infections since Christmas and the dr. is talking about putting tubes in his ears. We had a big scare last Friday. I took Lucas in to the dr. because he had a horrible rash. It looked like open blisters covering his arms and legs. While we were sitting in the waiting room he told me that his neck hurt. As he turned his head to show me the spot I noticed a large lump protruding out of his neck. I panicked and got the nurse. She then told the doctor about it and checked Lucas over. He was running a slight fever but was feeling pretty good. The doctor looked at his rash and at his neck and told me that he didn't know what either one was and that we should come back on Monday to see his primary dr. Of course I was not going to leave with that answer so I continued to ask if there was anything else that he could do knowing Lucas's history with cancer. He denied any further tests. I left very upset and decided to call the U of M. The on call oncologist talked to Lucas's primary dr. and assured me that it sounded like an infection but said that if it would make me feel better we could bring him in to the ER up there or wait until Monday to see them. After talking with them I decided to wait until Monday.
Monday we took him up and found out that the rash was from an allergy to the medication that he was on for his ear infection and the lump was in fact an infection that had actually gotten smaller over the weekend. The infection in his ear had drained into his neck and created a pocket of infection. I was so relieved to hear that was all that it was. I was so scared. I could not imagine going through what we went through 4 years ago. It was all happening just like it did then when I was at the dr. with him by myself and found out that he had cancer. All of those memories came back to me and I couldn't control my shaking and I felt like my heart was going to beat right out of my chest. I had to call Dave's mom and dad and they came up to the hospital, just like they did 4 years ago. I just couldn't do it on my own. I was starting to scare Lucas and I didn't want to make it any worse for him than it already was. It almost seemed like he remembered that time also. He was so nervous.
I just thank God that everything is okay. I prayed so hard all weekend that it was something other than cancer. Once again, God answered my prayers. (I think Buddy Addison was watching over Lucas too)
On the brighter side, Lucas is doing well again and the rash is all cleared up. He was so happy, he got glasses today. He has been talking about it all week and now they finally came in. He has been wearing them all evening. He really only needs to wear them in school, but I have a feeing he will be wearing them more often for the first couple of days.
Other than that not much else has been going on. Josh had to get braces on Monday too, so now both of the boys look a little bit different. Of course they are both still very handsome.
Thank you all for checking in. Hopefully next time I update I will only have good news to tell.
Please take a moment to sign in the guestbook. We love to read all of your entries.
Kristin
Tuesday, February 7, 2006 6:30 AM CST
Thank you all for checking in. I am sorry that I have not updated in a while, but Lucas has been sick with pneumonia and ear infection twice in the past couple of months. He is still on medication now, but is doing much better. Things look to be getting back to normal. I just wanted to let everyone know that Lucas had his CT scan yesterday and there were no changes. He will go back again in 6 months for another one and then we will see from there how often he will have to be checked.
He did so well yesterday. They had troubles putting in the first IV so they had to put it in the other arm. He did such a great job and has grown up so much. I am so proud of him. He was so happy to see Jody and a couple of his other doctors. He wanted to walk up to 5B to see some of his nurses, but we didn't have time. So now we are going to have to drive up there one of these days so that he can. He really misses them.
We did find out that Lucas has a blocked vessel coming from his liver. I guess he has had this for 2 years and we were not aware of it. We noticed that his veins were protruding on his right side of his abdomen so we thought we would bring it up. In the past we were told that it was from all of the surgeries that he had, but yesterday we found out different. We were told that this should not cause any problems for him. I am glad we found out what it was though just in case something ever did come up.
Lucas and Josh both have been busy with basketball. Josh is on the school basketball team and also on a traveling team. Lucas just started mighty mite basketball a month ago. He loves it and is so excited to go every Friday. He can't wait for swimming to start again. I think that will be sometime in March again.
Thank you all for checking in with us. Please take a moment to sign the guestbook. We love to hear from you.
Thanks again,
Kristin
Friday, December 9, 2005 8:28 AM CST
I finally found some time to update. I know that it has been awhile, but things just seem so hectic lately. On Wednesday, November 30th Lucas started full day Kindergarten. He was so excited and is doing very well. We were very hesitant at first because we thought that he would get too tired out, but it seems as though nothing can slow him down. He has started speech and with only half day Kindergarten he was missing out on a lot of the classroom activities. Now he is able to spend more time with his classmates. He has so many friends that he talks about daily. His wish came true about riding the bus home in the afternoon. He loves it. He doesn't get off of the bus until 4:30 so that makes the evenings very short for us. Tonight I am going to take the boys to a movie. They are both very excited about it.
I have still been unable to contact his favorite nurse, Mandy. So if anyone out there has heard from her or if she happens to be reading this now, please contact me. Lucas is very anxious to talk to her. We had a big surprise the other day when Lucas was going in for his immunizations. One of his nurses from the U of M, Lori, was working in Red Wing. I guess she will be here for the next year or so while her husband is practicing in Lake City. She was Addison's favorite nurse, or should I say, "his girlfriend". He really loved her. Actually, I can't think of any nurses at the U of M that Lucas didn't like. The doctors and nurses up there were all so great.
Lucas will be going back in February for scans. I don't expect that there will be any changes. He has been feeling well and eating better too.
Both of the boys are really excited for Christmas this year. Of course, all that Lucas wants is Batman stuff. He doesn't even care what it is as long as it has Batman on it. Josh on the other hand is getting harder and harder to buy for each year. I can imagine that it is only going to get worse every year.
Thank you all for checking in. Your concern has always meant a great deal to us. Please take a minute to sign in the guestbook if you get a chance. Lucas loves to have me read the entries to him.
Happy Holidays to all!
Kristin
Tuesday, October 25, 2005 6:12 AM CDT
I am sorry that it has been so long since my last update but there has been a lot going on with our family.
I had Lucas in the hospital last Tuesday night when he was running a fever of 103.7. I was so scared. He was crying and told me that he doesn't want to go to heaven. I knew right then and there that he was feeling miserable when he said something like that. With an x-ray and blood tests we found out that he had pneumonia. We were very surprised since he wasn't even coughing. He only had a stuffed up nose and a fever. On Friday night he was still running a high temp. and having horrible headaches so we took him back in and found out that he also had a sinus infection. He didn't go to school yesterday since he was up most of Sunday night with a headache. He was so tired. I knew that he wasn't himself since he wanted to stay home from school. He loves school. But now that the medicine is starting to kick in, he is feeling better during the day. The only problem now is that he is hurting at night from the sinus pressure when he lays down. This morning he was having another headache so I had him sit up and sleep. Along with a dose of Motrin, that seemed to do the trick. I just hope that he is feeling better for his big day today. He is so excited about being 6 years old. We are going to have a birthday party for him this afternoon. He can't wait!!!
My mom is also in the hospital. She was taken by ambulance from work Friday night. They ran tests and on Saturday they found out that her appendix was just about to burst. So she went in for surgery right away. She has been running a temperature so she is still in the hospital. She is also getting over pneumonia. Hopefully she will be getting out of the hospital soon.
With everything that is going on we are all staying occupied with my new little nephew, Carter. He is such a joy and I just adore him. He is growing so fast and changing so much every day. He is so much fun.
Lucas is planning on being Batman again this year for Halloween. Batman has been his life ever since his buddy Addison lost his battle with cancer. That is all that he wants for his birthday is Batman stuff. Addison will always be a special part of his life.
Thank you all for checking in. I do have one request though if any of you can help me. We have not been able to contact Lucas's favorite nurse Mandy through e-mail and he is very anxious to see her. Mandy....if you are reading this, could you e-mail me if you have a new e-mail address??? Lucas misses you so much. Or if there is someone out there who knows how I could get ahold of her, could you send me an e-mail at my yahoo address???
Thank you all so much for your help. It means a lot to Lucas.
Kristin
HAPPY 6TH BIRTHDAY LUCAS!!!!! WE LOVE YOU SO MUCH!!!!
Monday, September 19, 2005 2:24 PM CDT
Well, we have had a week of many surprises. Not all good surprises either.
My sister went to the hospital on Tuesday (September 13th) to be induced. After 14 hours her and Skip were the proud parents of a baby boy, Carter Michael. He weighed 7 pounds 8 ounces and was 20 1/2 inches long. I am a very proud auntie for the first time.
Things were going well until the next morning when I was out shopping and buying clothes for my new little nephew. I received a phone call that my sister was being transferred to Rochester hospital. I knew right away that it was her blood disease, TTP, returning. Her platelets were at 8,000. Normal platelet count is between 150,000 and 350,000. The doctor was afraid of internal bleeding so she was rushed by ambulance. She started receiving platelets and a blood transfusion on the way. I was so scared. We rushed there and met the ambulance at the front door. The baby was with her. His blood was checked and he is clear. It was not transferred to him. Thank God.
Since Wednesday she has had a catheder placed in her neck and is going through plasma pheresis. Finally she is able to go home today. She will have to go back for a checkup on Wednesday and again on Friday. They should decide then if she will need another treatment and when the catheder will be able to come out. I thank God every day that she is still here. I don't know what I would do if I ever lost her. She isn't only my sister, but also my best friend. Family means everything to me and my brother and sister are my world.
On the bright side......Lucas is loving school. He is only going half days, but could possibly switch to full days in December. I was just so worried that he would get too tired out going full days. I guess we will just have to see how things go. He is meeting lots of new friends. On the second or third day of school he came home and told us that he has a new girlfriend. Oh boy, and to think.....I have several more years of this.
Josh and Lucas are so excited about their new cousin. They didn't get to see him until 2 days later since Melissa was transferred to Rochester. Once they did get to see him they didn't want to leave. Especially Lucas, he just loves babies.
Thank you all for checking in and thank you for your prayers. They have gotten us through several tragedies.
Kristin and family
Wednesday, August 10, 2005 1:22 PM CDT
I am happy to say that Lucas's CT scan showed that the spot that is left could have possibly gotten smaller. He was quite a trooper Monday. It took him awhile, but he was able to drink the contrast mixed with some apple juice that was required to do the CT scan. This is the first time that he has had a CT scan since his G-tube was removed. He did great!!! He was so happy to see Jody (his nurse practitioner) that he gave her the biggest and longest hug ever. He sure did miss her.
Lucas was able to use some numbing cream before his IV was placed. Thankfully he didn't even budge when the nurse put it in. He didn't feel a thing. Josh came with to help encourage his little brother. He is always looking out for him. Lucas is lucky to have such a great big brother. I have a feeling that buddy Addison was also there watching over him. Of course, Lucas was wearing one of his new Batman shirts. Addison is never far from his thoughts.
We went up to 5B to visit some of Lucas's nurses and look around a little bit. It's amazing just how much he remembers. He noticed that some areas were painted a different color, and he remembered one of the Snoopy statues that him and Addison had their picture taken next to. One thing that I thought was very special is that all of the nurses refer to the playroom as the "big huge". That is what Lucas would call the larger of the two playrooms on the 5th floor. A doctor overheard us talking about it while we were walking down the hall and she told us that it was named that because of one little boy (as she gave Lucas a wink). We didn't know who she was, but she knew the story behind Lucas. That was very special to us knowing that there will always be a part of him there. Not that I ever thought that they would be forgotten, but knowing that every time the words "big huge" or "batman" are used, they will always think of Lucas and Addison.
Lucas does not have to go back for scans again until February of 2006. He is doing so well that they are going to hold off a little bit longer this time unless something comes up. I don't anticipate that, but I promise that I will update before then. Lucas will be starting kindergarten in September so I am sure that I will have something to talk about then. He is very excited to go back to school. He is only going to go half days to start off with. He can switch to full days if we think that he is ready. We had the option, so we decided to start off slow. I will let you all know how well he is doing.
Thank you so much for checking in and please be sure to sign in the guestbook.
Kristin and family
Wednesday, July 20, 2005 6:00 AM CDT
Again, I am sorry for the time that has passed by since my last update. Not too much has happened since our last update except that Lucas got his new hearing aids. Thanks to a place called Starkey. They were so generous and even gave Lucas 2 new pairs of hearing aids. We couldn't believe how great the people were that worked there. One of those people was Justin Osmund. Yes, that is Donnie and Marie Osmund's nephew. He looks just like Donnie. He was one of several amazing people that we met there. The owner of the company has met with so many famous people to fit them with hearing aids. I couldn't believe how many of them have hearing aids and you wouldn't even know it.
We returned on Sunday from Gilbert, MN. We spent the weekend with Addison's family. We had a great time, but it would have been better if I wouldn't have gotten an eye infection. I went to the doctor and I think it is finally starting to go away. Sorry for the mishap Deb, but thank you for the wonderful weekend. No matter what, it's always great to see you and the kids.
Lucas has scans on August 8th, so I will be sure to update as soon as we get the results. Please pray for nothing but good news. As always, we expect nothing but good results, but a prayer or 2 couldn't hurt.
Thank you for your continuous support and prayers.
Kristin and family
Tuesday, June 21, 2005 6:05 AM CDT
Yes, I am sorry again that it has taken me so long to update. With this warm weather, we have been spending a lot of time outside. The boys have been having a great summer so far.
Last Monday, we returned home from our Childrens Wish trip to Disney World in Orlando. The 4 of us had so much fun. We had just enough time to go to Cocoa Beach. It was the first time that any of us had ever been to the ocean. We visited most of the parks. We went to The Magic Kingdom, Animal Kingdom, Epcot, MGM Studios, and Sea World. I think the boys favorite was Magic Kingdom. There were more rides there that they enjoyed than any of the other parks. Lucas went on most of the big rides with us. I was worried at first, but he had a blast. I wasn't sure if he would be able to handle them. Boy was I wrong!!! Lucas enjoyed it so much that he is already asking me if we can go back. Every night after we returned to the hotel we went swimming. Lucas couldn't wait to get into the pool. It was the first time that he had been swimming since he was diagnosed with cancer. We even got to take a limo to and from the airport. The boys had never been into a limo before. They were so excited. I would like to thank everyone at Children's Wish for making this trip possible. It is one that we will never forget.
Lucas will be returning to the U of M for a CT scan in August. I don't anticipate any changes. He is doing great!!! We are so proud of him. He talks often about visiting his nurses. He really does miss them so much. We are going to have to take a day this summer to meet with them.
Thank you to everyone who has been checking in with us. I will continue to update as we get more news.
Kristin
Tuesday, May 24, 2005 6:11 AM CDT
I am so sorry that it has been so long since our last update. Lucas is doing great and we are very excited about our trip to Disney World in June.
This weekend was a very special one for us. Deb, Ashley, and Austin came down to spend the weekend with us. I had a DVD made for Deb with old pictures of Addison and Lucas together. My co-worker did such a great job on it and picked the perfect song to go with it. If anyone happens to know how to play a 4 minute clip on the caringbridge website.....let me know and I will do it so that everyone is able to see it. I am not the greatest when it comes to computers. That could be why I haven't updated the pictures in a while.
Now that Lucas is totally tube and medication free, he is enjoying life as a normal 5 year old. We have been spending a lot of time outside. (that is...when it isn't raining.) We were even able to go buy a pair of swim trunks this weekend. Boy was that exciting....we finally found a batman pair. It's funny how when Addison was alive, he wanted nothing to do with batman. Batman is everything to him now. A week ago we bought the bedding set to re-do his room. Every new shirt that comes out with batman on it, Lucas wants it. I think that it is his way of remembering his buddy.
Last night we went to open house at Lucas' new school. He will be in kindergarden next fall. He is sad that he will not have the same teachers, but is excited about seeing all of his old friends again. Last Thursday was his last day of pre-school.
We finally were able to get funding for his hearing aids. Thursday this week we have to take him up to the U of M to be evaluated. The only way that we can get funding is if we go through them. Red Wing is just going to send all of the test results to Minneapolis so that we don't have to do them all over again. That makes things a lot easier. Thank you to the Miracles of Mitch Foundation for all of your help. Without you we would be struggling to pay for them. Mitch was a good friend to Lucas and Josh while he was in the hospital. They enjoyed playing basketball in the hallways together and watching Mitch blow those sticky bubbles all over the halls of 5B. He will always hold a special place in our hearts.
I will update again after we return from our trip. I am sure that I will need a couple of days to recooperate. (sorry if I spelled that wrong.)
A very special "HAPPY BIRTHDAY" to Josh on Thursday (May 26th)
We love you Josh!!!
With our love,
Kristin and family
Tuesday, March 29, 2005 8:58 PM CST
I am happy to say that there was no change in Lucas's CT scan. To top it off, Lucas gets to have his G-tube taken out next Tuesday. He is very excited. After the tube is taken out, the doctors will decide whether or not the hole has to be surgically closed. I pray that it closes well on its own. Once this is out, Lucas will be free of all tubes and medications. I don't know how long it will take us to get used to that. Boy, it has been a long 3 years. It's sad that it had to happen this way, but we have met some of our most dearest friends through this long journey. Most of which we have kept in contact with throughout the years, but all we hold close to our hearts. This also includes those of you that sign in the guestbook whom we have never even met. You have all touched our hearts in ways that we will never forget. Thank you for your continuous support and prayers.
Kristin
Friday, March 11, 2005 8:59 PM CST
I would like to begin this entry by saying thank you to everyone for checking in. For those of you who we do not get to see very often, "we miss you so much".
Last weekend we found out that Lucas's wish to go to Disney World was granted. He was so excited that every time we leave the house now he asks us if we are going to see Mickey Mouse. I tried to explain to him that it will take a little while before we can go, but it is just too hard for him to understand that we have to wait. I too am very excited that we finally get to take a real family vacation. Out of the 4 of us, I am the only one that has been on an airplane. Of course that was when I was 14, so it has been a while. So I am sure that this will be an interesting flight. Hopefully within the next few weeks we will find out the exact dates that we will be going. I am sure that there is a lot of planning that needs to be done.
On Sunday we went to the Ridgedale Mall for the KS95 for kids radiothon. KS95 raised over 1 million dollars again this year. It went very well and Lucas was very excited that he was able to see a couple of his nurses there. I was very suprised that there were not as many of them there this year. To those of you who were not able to make it, I just want you to know that Lucas misses you all very much. We hope that we are able to see you again sometime in the near future. Of course I mean "outside of the hospital."
Yesterday Lucas got fitted for his hearing aids. He did so well and I am so proud of him. Not too long ago he wouldn't even let the doctors look in his ears. He has come such a long way. He gets to pick out what colors he wants, and he is leaning towards swirled colors. The mold will have to be changed every six months because he is still growing, so he will be able to change the color of the ear piece every time. After talking with him, he is now willing to wear the hearing aids knowing that he will be able to hear a lot better. I think that letting him pick out the colors is helping. We will do whatever it takes to make it more comfortable for him. We are checking into different organizations to help us pay for them. Hopefully there is some way that we can get the help that we need.
Lucas is doing very well in school this year. He enjoys his teacher and is making a lot of new friends. I am glad that we decided to put him into pre-school another year. After spending so much time in the hospital, he needed that. Not to mention that he loves school. Our refrigerator is packed with paintings and drawings. He will not let us throw anything away. I don't know where we are going to put any more. I think we need a bigger house just for Lucas's stuff.
Lucas has a CT scan again on March 21st. I will update again as soon as we get the results. Lucas is very upset that he has to have another IV put in, but I explained to him that he needs to have this done in order to find out how good he is doing, and then they will take it out before we go home. I do not expect any changes in the CT scan, but I imagine that he has lost some weight and the doctors will want us to start the feeds again. He is eating some foods, but not enough of the good stuff. I know that kids his age are picky, but I worry about him. I just want him to stay healthy and out of the hospital.
Please pray for good test results. I know that I will be.
Thanks again for checking in.
Kristin
Monday, February 21, 2005 4:36 PM CST
***PLEASE MAKE SURE THAT YOU ALL LISTEN TO KS95 THIS WEEKEND (3/4/2005-3/6/2005).***
Thank you to everyone for all of the encouraging e-mails and guestbook entries. It really makes me realize how important it is that we keep this website going.
On Friday we met with the audiologist in Red Wing and Lucas had his hearing tested again. He has a significant hearing loss with the high pitch tones. It was pretty much the same results as we got the last time. Next we have to meet with an ear, nose, and throat doctor. He has to make sure that the hearing loss is associated with the chemo so that we know whether or not we qualify for assistance to help pay for hearing aids. Either way, I think that there is help out there for us.
On Saturday we took Lucas and Josh to the monster trucks at the Metrodome. They had a blast. Every time before the truck would crash into the cars, Lucas would straighten out his legs and tense up. Then he would get the biggest smile on his face and let out a big scream. He just loved it. He told me that he wants to go back there again. I think next time we will buy our tickets in advance so that we don't have to stand outside in the cold snowy weather. Other than the slippery drive home, we all had a great time.
On Sunday, Lucas went to a birthday party at the bowling alley. His first time bowling and he walks up and throws a strike. (Of course there were bumpers in the gutters, but who needs to know that.) He had to give all of the boys high fives and he had the biggest smile on his face. He was so proud of his strike. Wow, all of the talent this boy has... basketball, baseball, and now bowling.
Now we are waiting to hear back from Make-a-wish. Lucas's wish was to go to Disney World. He loves Mickey Mouse and is excited to see him. He was so excited to see the monster trucks and go bowling, I can't wait to see the look on his face when we fly in an airplaine and go on a real family vacation.
We will be going back to the U of M for scans on March 21st. I don't expect anything but good news, but a prayer or two wouldn't hurt. Please pray for good results.
Thank you,
Kristin and family
Wednesday, February 2, 2005 4:57 PM CST
I am sorry that I have not updated in a while, but it is hard when I look at the guestbook and it doesn't seem as if anyone checks in anymore. I almost feel as though I am spending my time typing for nothing.
For those of you who do still check in, "thank you" and I will give you the good news.
Lucas is doing very well. He just recently got over a touch of the flu. He was not eating very good, but is starting to eat a little bit more each day. He is not taking feeds at all anymore. We will be taking him back for a check-up in March and then we will find out if he is eating enough to stay off of them. He is doing very well in school and has lots of friends.
We will be going in to the audiologist in 2 weeks to get him fitted for hearing aids. His insurance will not cover them, so we are trying to figure out how we can get help paying for them. Hopefully there is some kind of assistance out there.
Yesterday at work we found out that our boss is buying the business!!! This means that we won't be loosing our jobs!!! I am so glad that I won't have to look for another job. I was going to go into nursing, but I am not so sure that is what I want to do. I just don't know, and now I won't have to worry about it. I am happy where I am and that is all that matters.
The not so good news is that Josh is out of basketball for the rest of the season. He twisted his ankle in phy-ed when they were roller skating and sprained it. He was using crutches, but only has to wear a brase now. It is feeling better now and he is debating whether or not he is ready to play in his last tournament.
Thanks again for checking in. Please leave us a note just to say "hi" so that we know you are still out there.
Kristin and family
Wednesday, December 15, 2004 8:02 PM CST
I am so sorry that it has taken me so long to update. I recently found out that our company is closing and I will be out of a job soon. I am so nervous that I won't be able to find a job right away. I guess when one door closes another one opens, right???
On the bright side, Lucas had his CT scan on Monday. Yesterday we found out that there is no change. There is still the same spot that is about 1x2 cm. It has not gotten any bigger, so we are very happy with the results. Lucas could live with this spot for the rest of his life. The doctors are still not sure whether or not it is actually live cancer or just scar tissue. We on the other hand believe that it is scar tissue. I think that it would have grown at least a little bit the past few months without treatment if it was live.
Today while I was out shopping, I ran into a lady that I had met a few years ago when Lucas was first diagnosed. She told me that her daughter, who had the same type of cancer as Lucas, still has a spot that shows up on her CT scan and she has been without treatment for about 5 years or more. Stories like that make you believe that everything will be okay.
Some more good news... Lucas had his platelets checked for the first time after his gallbladder was removed and they were at 117,000!!!! This is the highest they have been on their own in a very long time. I guess that they were all being used up on his gallbladder seeing as it was very sick and diseased. He is so happy. Not too many 5 year olds even know what platelets are. Lucas is almost as excited as he was to open presents on his birthday. This is a big event for him.
Next Monday we are going to meet with the doctors to discuss Lucas' G-tube. It is possible that he might be able to have it removed. I just hope that we will be able to get him to take his medication orally and eat better. He is starting to eat a lot better lately. I just wish that he would put on a little weight. He has grown 5 cm in the last year, but hasn't put on much weight. Hopefully that will come soon.
I will do my best to update again soon and hopefully put up some new pictures. Lucas is getting very anxious for Christmas. Every day he has asked us when the Christmas Guy is coming and if tomorrow is present day. I am so glad that we will be able to enjoy a healthy and happy Christmas with Lucas this year. Finally, a holiday without stomach aches!!!
Happy Holidays!
Kristin and family
Saturday, November 6, 2004 7:57 PM CST
Lucas returned home from the hospital yesterday. The surgery went well and other than a little bit of pain, he is doing well. He is on pain medication that seems to be working well. The surgeon told us that he has been doing this type of surgery for 20 years and previously worked at a VA hospital. He said that Lucas had the sickest gallbladder that he had ever seen. It was so bad that it had actually fused itself to his small intestine and it had to be surgically repaired. Lucas has not had normal liver tests now for awhile which they think was caused by the gallbladder disease. Just in case that was not the problem, they also took a liver biopsy. I just pray that there is not another problem. We should find out when we go back for a checkup on the 23rd.
Lucas was very happy to see all of his nurses. He was also very happy that Mandy was able to come and visit even though she does not work there any more. She will always mean so much to him. Thank you so much Mandy for taking the time to come and see him. It meant a lot to all of us. He also had a blast with Crista, another one of his favorites. She always brings a smile to his face. He had so much fun with her that he didn't even want to come home. He wanted to stay in the hospital another day. It always makes you feel good when your child feels so comfortable in a hospital. I can't imagine him being treated anywhere else.
Thank you to everyone for checking in. Please leave a note for Lucas to help cheer him up. He would really appreciate it.
Kristin and family
Wednesday, October 20, 2004 5:13 PM CDT
Yesterday we met with the doctors to discuss Lucas's surgery. It is scheduled for November 3rd. He will be in the hospital for about 3 days. Please say a prayer that all goes well and Lucas has a quick recovery. He was having some stomach pain this morning, so we pray that this is just a one time deal and things will go smoothly until November.
Also, after 2 weeks of waiting impatiently, Josh found out that he made the basketball team. He is so excited and we are so proud of him. Congratulations Josh!!!
I will let you all know how the surgery goes. Until then, we will be enjoying the next couple of weeks at home and also celebrating Lucas's birthday on Monday, and of course Halloween in which Lucas has decided to be Batman. He misses his buddy Addison so much and I think in a way this makes him feel closer to him.
Thank you for checking in and I will update again soon. Please take a minute to sign the guestbook, Lucas still enjoys hearing from you.
Happy 5th Birthday Lucas! Mom, Dad, and Josh love you so much!!
Tuesday, October 5, 2004 4:41 PM CDT
****** UPDATE October 20th ******
Yesterday we met with the doctors to discuss Lucas's surgery. It is scheduled for November 3rd. He will be in the hospital for about 3 days. Please say a prayer that all goes well and Lucas has a quick recovery. He was having some stomach pain this morning, so we pray that this is just a one time deal and things will go smoothly until November. Also, after 2 weeks of waiting impatiently, Josh found out that he made the basketball team. He is so excited and we are so proud of him. Congratulations Josh!!!
I will let you all know how the surgery goes. Until then, we will be enjoying the next couple of weeks at home and also celebrating Lucas's birthday on Monday.
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Thank you for checking in and I will keep in touch.
After several weeks of waiting we found out yesterday that Lucas has to have his gallbladder removed. The next step is to meet with the doctors to discuss the procedure. We are waiting to hear from our nurse-practitioner to find out when that will be. Hopefully at that time we will find out when the surgery is scheduled for. There have been a few occasions in the past few weeks where Lucas has had some stomach pain. It was nothing too serious, but it was enough to know that this is probably the right decision. This is not the news that we wanted to hear, but we are willing to do anything to insure the health of our son.
I have been talking to Lucas about having surgery, and at first he was very upset. That was until I reminded him that he will be getting gifts while he is in the hospital. Mom just can't go by the gift shop without stopping in. Not to mention that he will be able to see all of his favorite nurses. Even though Mandy is not working on the floor any more, we are hoping that she will be able to stop by for a visit. Also, Krista... Lucas is very anxious to see if you leave your stethescope in his room again. That was all that he talked about yesterday. He is also very excited about getting Casey back with some water. Boy, he doesn't forget a thing!!! He has so many wonderful memories of 5B that it is making it easier for him to go through this again. I thank all of the doctors and nurses for that.
Lucas is still enjoying school and playing with his puppy. Dave also built him a new swingset that he spends most of his days playing on. We have all been keeping busy. Josh is trying out for basketball again this year. Today is the last day of tryouts and he is very nervous. I just keep telling him that he just has to do his best and that is all that matters. I am so proud of him. The boys and I spent the weekend in the cities with Deb, Ashley and Austin and had a great time. We went to the 25th anniversary of the Ronald McDonald House and were able to see a lot of people that we have not seen in so long. I am so glad that we were able to go.
I will let you know when we find out more about the surgery. Hopefully we find out soon. We might have to plan Lucas's birthday around the surgery. He will be 5 on October 25th. I can't believe how fast the time has gone. My boys are growing up so fast.
Thank you for sticking by us through all of this,
Kristin and family
Thursday, September 23, 2004 8:51 PM CDT
I am so sorry that it has taken me so long to update, but we really have no answers yet. When Lucas went in for his MRI, he ended up having an ultrasound instead. The radiologist decided it would be the best way to find out if he had gallstones. It doesn't seem as though he has any, but it looks like he could have a calcium build up that could have been caused by radiation. This would not be a need for surgery, but it still does not explain why his liver functions are abnormal.
This is so frustrating not knowing what is going on. The last thing that we would want is for Lucas to have surgery, but we need some answers as to why he was having pain and a temperature. And why are his liver functions still high? There must be something going on inside of his little body. All in all, he is doing very well. He loves school and wants to go every day. This year he only goes 2 days a week.
I will let you know if we have any more news. I pray that the answers to my questions will come soon.
Thanks for checking in,
Kristin
Monday, September 6, 2004 5:29 PM CDT
I am so sorry that it has taken me so long to update. We have been so busy. Last weekend we went to the zoo with Deb, Ashley, Austin and some other friends that we met while in the hospital. We all had a great time. Friday night we spent the night with Deb and the kids at their hotel. We went to a car show and just had a great time visiting with friends. On Saturday Dave drove up and we all went to Como Zoo together. Lucas was so excited to see all of the animals.
This weekend we went to the state fair. Of course Lucas had to go through every cow, horse, sheep and pig barn there was. He loves animals. It was a lot of walking so we were sure to bring his stroller with since we knew that he would get tired. He actually walked most of the way though, and he even tried some more new foods. Of course like his mommy, he loved the cheese curds.
Lucas and Josh are both back in school. Josh started Middle School this year. Boy was that a big change. Both of the boys love school. Lucas goes to school on Tuesdays and Thursdays for only 2 1/2 hours. He is so excited to see all of his friends and teachers again.
We have been spending a lot of time with our new puppy, or should I say Lucas's new puppy. Her name is Lexie and she is having a hard time with pottie training. Just when we thought that she had it down, she started having accidents again. Hopefully it will only get better with time.
We will be taking Lucas up to the U of M on Monday September 13th for an MRI to see if there are any gullstones present. From there we will find out when surgery will be and go from there.
I will update as soon as we find out any results.
Thank you for checking in,
Kristin and family
Tuesday, August 10, 2004 7:32 PM CDT
Yesterday we found out that Lucas' tumor looks about the same. Believe it or not, this is a good thing. The only thing that we don't want to happen is for it to get bigger or brighter on the MIBG scan. We are going to continue without any treatment.
One thing that we did find out is that his gallblatter is still full of sludge or stones. This means that it is most likely diseased and will almost definitely have to be removed. We will meet with the doctors in about four weeks to decide when the surgery will take place. If we do not go ahead with the surgery, he could get an infection which could cause him to get very sick. As for now, we just need to watch for a fever or more of the intense abdominal pain. If he has either of these symptoms we have to take him in right away. It may be possible that he will have to have surgery earlier than planned. I pray that this is not the case.
The doctors also think that this could be the reason that Lucas is still not eating as much as he should be. If this is the case, hopefully this surgery will help his appetite. He has actually started eating a little bit better this last week. Maybe after he passed stones his stomach settled a little bit. I am not sure what the answer to this one is, but I do know that he has put on some of the weight that he lost over the past few months.
I will let you know as soon as we find out when the surgery is scheduled for. In the meantime, please say a prayer for Lucas.
Thank you for checking in and continuing to support us. We appreciate all you have done.
Kristin and family
Thursday, July 15, 2004 6:19 PM CDT
UPDATE: 7/20/2004
Well, another weekend spent in the emergency room. Lucas was running a fever of 102.1. He was having very intense stomach pain. Blood cultures were done and nothing has shown up yet. Yesterday we took him to the U of M and today we got a call that his liver function test came back high. Remember way back when his billiruben was high and scans showed that he had sludge in his gulblatter and possibly gullstones? The doctors seem to think that he passed one. He is going to have another liver function test on Thursday to make sure that it is back to normal. If not, more tests will have to be done to find out why that is high. Gullstones would explain it if it is back to normal. If not, I pray that it isn't anything serious. He is feeling very good today, and is no longer running a temperature.
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Sorry that it has taken me so long to update. We have been very busy this summer going to fairs, playing outside in the sandbox, riding bike, and of course playing basketball. Last weekend we had to take Lucas to the emergency room at the U of M. His G-tube came out of his stomach. We took him to the emergency room in Red Wing first and they put a foley in the hole so that it wouldn't close up. When Lucas woke up in the morning, he was screaming that it hurt real bad so we took him up to the cities. They put a new tube in and he was feeling fine and ready to go home in minutes. We did not have to stay the night. That was kind of scary, but we got through it with flying colors. Or should I say that Lucas got through it. He was so brave. Before they put the new tube in I asked the doctor if they have one that he could take a bath with. He told me that there was never a reason to keep him out of water. For the past year and a half we have been giving him sponge baths because we were told by one of the doctors that he could not take baths. Now we find out that he just can't swim in a dirty lake or river. He still can't get his central line wet, but at least now he can take a bath. Boy was he excited, he has spent most of this past week soaking in the tub.
The next scans will be on August 3rd and 4th. We will find out the results on the 9th. Depending on how the scans turn out, the doctors will decide whether or not he can have his central line taken out. The only bad part of that is that he will have to have blood drawn from his arm every month. His line is a source of infection, so it will be good to get it out. Please pray for good news on the scans. He is doing so well and feeling so good that it can only get better, right?
Unless something comes up before then, I will not update again until we get the results of the scans. Please say an extra prayer for our son.
Thank you for checking in. Please sign in to let us know that you are still out there.
Kristin
P.S Buddy Addison~
Please continue to watch over your buddy Lucas during his scans. I know that you are always with him and looking over him. He talks about you and looks at you beyond the clouds. He says that he can see you and I believe him. The two of you were so close. We love you Batman and miss you so much.
Wednesday, June 23, 2004 9:08 PM CDT
I am so sorry it has taken me so long to update. I have no excuses except that Lucas just won't slow down long enough to let us get on the computer.
Last weekend the kids and I drove 4 1/2 hours to Gilbert, MN to visit another one of our favorite families from the Ronald McDonald House - The Toivolas. We had a great time with Addison's family. Thank you Deb for opening up your home to us. We appreciate all that you have done for us.
I now have a Batman sticker on the back of my truck. I am so proud to show that we were a part of Addison's life. We still miss him deeply. Yesterday Lucas was lying on the ground outside looking up at the sky. He yelled for me to come over and look with him. His exact words were, "mommy look, there's Addison. He is watching me in that hole." I believe that he really can see him. I told him that his buddy is watching over him. He also told me that he saw Addison's feet in the clouds. That is one that I couldn't explain.
I think that I am going to take the boys to the movie "Garfield" on Friday. Lucas has never been to a movie theatre. I know that he will love it. It has been a long time since I have been to a theatre, so I am excited too.
One more update:
Lucas had his counts checked yesterday and his platelets are at 60,000 and his hemaglobin is at 12.1. YEEEAAAHHHH!!!
Finally, counts that are in the normal range without a blood or platelet transfusion. We are all very excited!!!
Thank you for checking in with us. Please continue to sign in the guestbook even if just to say "hi". Lucas has been a little bored lately without much for me to read to him.
Thanks again,
Kristin
Tuesday, June 1, 2004 5:37 PM CDT
Today we found out that Lucas is not going to have any more treatments. The specialist in California said that Lucas should not have any more Retinoic Acid because after too long it could slow down his bone growth. He is going to have his blood checked once a month in Red Wing and will have scans again the first week in August. Positive MIBG scans could just mean that the cancer is maturing into normal cells, so as long as there is not a change in the scans this plan will continue. Soon they will decide when Lucas can have his hickman line out. This will decrease his chances of getting an infection. He can not have his G-tube out until he starts to eat more. Right now he is only receiving 300 ml. of feeds, but he is not gaining any weight. He really wants to swim this summer, but until he starts to eat more that is not possible.
Last Wednesday (May 26th) was Josh's 11th birthday. Since the last couple of years we have been in the hospital, we decided to let him have a sleepover with friends from school. I realized just how lucky I am to only have 2 boys. Seriously though, they were pretty good kids. They all had a lot of fun, even Lucas got to join in on some of the action.
Congratulations to my brother Matt and my sister Melissa. They graduated from Plum City High School this Saturday. All of those years finally paid off!
Please say a prayer for the family of Kate Huppert. Her uncle informed me at work today that she passed away this Saturday. Only one week before graduation. The boys and I were very fortunate to have met her a couple of weeks ago. I was only able to meet her once, but from what I heard about her, she was a very strong, brave, and courageous young lady. She has a very wonderful aunt and uncle who have been there for us these past 2 years. Our family is very greatful for their kindness and support. Kate will be missed by many. My thoughts and prayers go out to her family and friends.
Thank you for checking in.
Kristin
Monday, May 24, 2004 5:10 PM CDT
Today we got the results of the scans. It's not the news that we wanted to hear, but it isn't bad news either. The MIBG scan looks better than the one that was done 2 months ago, but there are still live cells. The doctor is going to call us in a few days after she consults with a specialist in California. They need to decide whether or not we are going to continue with the Retinoic Acid or go without any treatments at all. Neuroblastoma is a kind of cancer that is known to turn into normal mature cells on its own. If we go this route, he will have scans monthly to make sure that it is not growing. I just pray that things go the right way no matter what they decide to do. All of his blood counts look good, and he hasn't even had platelet or blood transfusions in months. The doctors are very happy with his progress.
There is another medication that Lucas could take instead of the Retinoic Acid, but it consists of 17 pills a day. The bad news is that he would have to have a biopsy before he could take it. There is just no way that he could take all of these pills. It is not possible to put these in his G-tube either. So it doesn't sound like this is an option.
We had a great time in South Dakota for Josh's graduation this weekend. It was so nice to see our friends again. We even had enough time that we were able to go see Mt. Rushmore. The kids had a blast. I have to admit, it was a long drive to Rapid City knowing that we were leaving our friends behind. It was very hard to say goodbye. Hopefully it won't be too long before we get to see them again.
Thank you Osterburs for opening up your home to us. We really appreciate all that you have done. You are a very special family and we will never forget you. Congratulations Josh! Good luck in the Air Force.
Thank you to everyone for checking in with us. Please leave a little note in the guestbook even if to just say "Hi". We love to hear from you.
Kristin
Friday, May 14, 2004 4:48 PM CDT
Sorry again for taking so long to update. It's just that until the scans, there is not much to report. Everyone is doing well, and finally feeling better. Lucas finished his last day of pre-school yesterday. He is not too happy about that. On Tuesday his class went on a field trip to a dairy farm. I decided to chaperone, but Lucas didn't really know what to think about that. He told me that I couldn't stay with him at his school and that I was too big to ride the bus with him. He finally decided that it was okay for mom to go with. There was one exception - I could not sit with him on the bus. He wanted to sit with his friends. Isn't he too young to start that? Boy is he getting independant :(
Next weekend we are heading to South Dakota to visit some friends that we met at the Ronald McDonald House. Their oldest son Josh is graduating from high school. In January of 2003 they lost their daughter Alisha to Leukemia. They are one of the most amazing families that I have ever met. The boys and I are so excited to see them.
The next couple of weeks are pretty full for us. In two weeks my brother and sister graduate. Where does the time go? I know that they will love to hear this, but really, it seems like just yesterday that I was changing their diapers.
The scans are scheduled for next Wednesday and Thursday. I will let you know the results when we find out on Monday the 24th. Until then I don't plan on updating again unless something comes up.
Thank you for continuing to check in with us.
Kristin
Sunday, April 25, 2004 7:13 PM CDT
Sorry it has taken me so long to update again. I really have no good excuses except that the weather has been somewhat descent and we have been spending time outside. Today I walked 4 miles with my sister and a couple of friends for the March of Dimes. Also, yesterday was Dave's birthday. I would tell you how old he is, but he might be reading this later on tonight.
As for Lucas, he is not feeling the best. The past couple of days he has come down with a cold. Actually, both of the boys have. He woke up this morning and could barely talk. He got so upset that he ended up crying himself back to sleep. Josh is starting to feel a little bit better already. I pray that Lucas starts to feel better soon.
Before I forget, I should probably let you all know that Lucas is doing very well in school. Like a good friend of the family said, "Josh's positive characteristics are rubbing off on him." He even woke up in the middle of the night last week crying that he wanted to go to school "NOW".
On May 19th and 20th Lucas is scheduled to have his scans. We will meet with the doctor on the 24th to find out the results. I just wish that this could all be over with. How long can this go on? I am sorry for going on about this, but I am just so frustrated right now. All that I want is for Lucas to be free of cancer. Is that too much to ask for?
Again, I am sorry. The past 2 years have just been wearing me down. Just when you think that things are going to turn around, you get another curve ball thrown at you. I know in my heart that eventually the cancer will be gone. I just wish that it could be sooner rather than later.
Please sign in the guestbook. We could really use some comforting words. Just knowing that you are checking in with us makes a difference.
Thank you,
Kristin and family
Tuesday, April 13, 2004 6:53 PM CDT
I hope that you all had a wonderful Easter. We sure did. Just being home was good enough for us. Last year Lucas was in the hospital, but the doctors let him out on a 3 hour pass to the Ronald McDonald House. I can't believe it has already been a whole year. I was looking back on the past journal entries that I have written and I couldn't believe how much trouble he was having at that time. Boy has he come a long way.
On Friday we were able to send 5 Batman balloons up to our buddy Addison in heaven. Lucas yelled "happy birthday buddy" after each one was released. It was a very emotional time for all of us. We miss him so much.
We also spent some time with Addison's mom, brother, and sister on Saturday. We all went out to eat and spent the day together. It was so nice. Yesterday they all drove down to Red Wing for the first time. I took them up to Wal-Mart so they could see Addison's picture in McDonald's. This was the first time that they had seen it.
All in all it was a very emotional weekend. Full of laughs and also full of tears. I am so glad that we were able to spend time with our great friends. I just wish that we all lived closer to eachother so we could do this more often. Thank you Deb, Ashley, and Austin for the great time.
I would also like to thank everyone for signing in the guestbook. I do still read the entries to Lucas. He loves to hear from you. Even from those of you that we do not know.
I will update as soon as we find out about the next scans. I hope it is soon.
Thanks again,
Kristin
Tuesday, March 30, 2004 6:51 PM CST
Seeing as the last few entries have not been the happiest to read, I thought I would focus on the positive side this time.
Lucas had his first day of pre-school today. He cried when Dave first dropped him off, but he settled down quickly and had a great time. I was worried sick all morning at work since Lucas is not used to being away from us. He only goes to school from 8:30 a.m until 11:00 a.m. on Tuesdays and Thursdays. All he could talk about the past few days was going to school. He even has so much confidence now that he is starting to eat more. Yesterday he told me that he wanted a cheeseburger from McDonald's and I had to ask him twice if that is what he really wanted. He has not eaten a cheeseburger for close to 3 years. I don't think he really liked them at all before he got sick, but he ate half of it, plus some fries. He was so excited.
I know that the news that we got last week was not the news that we wanted to hear, but I do believe that everything will work out. We have a very strong little boy who is determined to fight this. We will not give up!
April 9th is the birthday of our buddy in heaven, Addison. The boys and I have decided to celebrate his life by letting a batman balloon go into the sky. Lucas would like to give this gift to his buddy who he loves and misses so much. Please stop by his website and leave some comforting words for his family. I am sure they would appreciate it.
Thank you to everyone for signing the guestbook. Please don't hesitate, Lucas loves to hear from all of you. Also, thank you to everyone at the pre-school who has been working with Lucas. It makes it so much easier being separated from him for those few hours knowing that he is being taken care of by such great people.
Thanks again,
Kristin
Thursday, March 25, 2004 8:31 PM CST
Things are so confusing to me right now. Today we met with the doctors and looked at the scans. They can not prove that the spots that are showing up are live cancer cells. I will try to explain this the best that I can, so here it goes:
The live cancer cells that Lucas had 6 months ago could have died and turned into normal cells. These new normal cells could be what is lighting up on the MIBG scan. I guess that they are a close relative to the Neuroblastoma cells, but are not cancerous. The doctors are not sure, but the mass could be slightly larger. For that reason, they have to assume that he could still have live cells.
The next step is to continue the Retinoic Acid for the next 6 to 8 weeks. After that he will have 2 MIBG scans within 48 hours. They want to see if there are any changes between the two and compare them with the previous scans. If there are live cells left, it doesn't sound like they want to do chemo. Only if things got worse and it started to spread. One option is a liquid form of radiation, but because of certain Minnesota laws it is not available here. We would have to go to California to get this treatment. I would not care how far we would have to go, I would travel the world to do what it takes to kill this cancer. It doesn't sound like he can get any treatment without having a biopsy of the tumor done again. That is one thing that I don't want him to go through again, but he is strong and will get through that like he has everything else.
Please say a prayer for Lucas. Your prayers have done wonders in the past and I am sure they will again.
Thank you, and please be sure to sign the guestbook.
Kristin
Tuesday, March 16, 2004 6:02 PM CST
********* Update 3/20/2004 *********
I am not quite ready to talk about this yet, but yesterday we found out that Lucas's cancer still looks like it did 6 months ago. I should be glad that it didn't get any bigger or didn't spread, and believe me- I am, but I guess I was just hoping for better news. I thought for sure it would be gone this time. It just feels as though he has been going through this for so long and it was all for nothing. He is doing so well, how could there still be cancer inside of his little body?
We will be meeting with the doctors next Thursday instead of next Tuesday. They need a little more time to figure out what the next plan is. Obviously the Retinoic Acid is not doing what we had hoped it would do. It doesn't sound like they want to do chemo since his blood counts are doing so well, but I don't know what other choices they have at this time. I guess we will find out for sure on Thursday. I will update then. Thank you for your prayers, please continue to pray for Lucas.
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2 years ago yesterday we found out that Lucas had cancer. He is still fighting, but is not going to give up. We will beat this!
Today Lucas had his CT scan done. When it was all over with, he asked the nurse if his cancer was gone. This hit me really hard because I have never heard him refer to it as cancer before. Usually he just asks us if he is better yet, or he tells us that God is helping him get better. Never have I heard the word cancer out of his mouth. We explained to him that he has to have more pictures (this is what he calls the scans) done tomorrow and then we will find out for sure. We told him that we hope so, but if it isn't gone, then it will be soon. They are going to call us with any results as soon as they hear anything. We have an appointment to meet with the doctors next Tuesday to discuss future plans depending on the results. I pray for clear scans and no more treatments. Please say an extra prayer for Lucas the next few days.
We met Lucas's favorite nurse Mandy at the hospital today. He was so happy to see her. He made her a picture with Batman stickers that he got from his clinic appointment this morning. (See~ I told you that Addison would be with us today.) We also bought her a special gift that Lucas picked out on his own. It was a crystal rose with a butterfly on it. He couldn't wait to give it to her. Thank you Mandy for making today so special for him. You mean the world to him.
We are so thankful for ALL of the doctors and nurses that have been there for us. I know that Lucas has a favorite, but he talks about all of you so often. You all mean so much to him. There have been so many times that he mentions things that he remembers from his time spent at the hospital. The smallest things that nurses have said or done that made him laugh. He has memories of all of you that he will probably never forget. In his eyes, you have all made him better. Your humor, kindness, and love for our son has gotten him this far. You helped make his long stay at the hospital a lot easier. Dave and I would have gone crazy without your support. We will never forget any of you.
Thank you to all of our family, friends, neighbors and co-workers for your support. There have been so many times that we needed someone to talk to, or just someone to listen, and you were always there. Not to mention those of you who we have never even met that have helped us through this. Your kind words have meant so much.
I can't say thank you enough to everyone that has been there for us these past 2 years. We will never forget what you have done.
Kristin
Tuesday, March 9, 2004 4:44 PM CST
Sorry it has taken me so long to update. Yesterday I was home sick from work. I just haven't been feeling myself lately. Josh and my brother are sick too. Lucas was so upset when I told him that I was sick and had to go to the doctor. He actually cried. He asked me if I have to have surgery since I have to take medicine. I feel so bad, he thinks that everytime someone is sick, they either have to have surgery or stay in the hospital. I came home from work today and he gave me a hug and asked me if I was all better. It is all so scary for him, and so hard for him to understand.
On Sunday we went up to the Mall of America for the KS95 radiothon. It was such a great experience to be involved in. There were so many nurses, doctors, and friends that we have met at the hospital there. We also got the chance to take the boys to Underwater World. They had a blast.
Lucas went to clinic today and his counts are still holding in there. His platelets are actually in the 40's now. Everything is going so well!
Please say an extra prayer, Lucas has scans next Tuesday and Wednesday. I have very positive thoughts about these. Lucas is such a fighter. Besides, how could we get any bad news with our buddy Addison watching over him.
Please take a minute to sign in the guestbook. Remember~ Lucas loves to hear from you.
Thanks,
Kristin
Wednesday, February 25, 2004 6:24 PM CST
STILL DOING GREAT!!!
Update:
If you can, make sure you listen to Van and Cheryl's KS95 radioathon today through Sunday. Lucas's story will be told. All donations will go to the Childrens Cancer Research Fund and Gillette Childrens Hospital to help children with cancer and other life threatening diseases.
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Lucas's platelets are still above 30,000 without having to have a transfusion. Dave took him into clinic yesterday and we finally have dates for his scans. We will be taking him up on March 16th and 17th. Please pray for good news.
He is starting to try a few more new foods. The good thing is that he is drinking a lot of milk. Boy does he love his milk! He is still so full of energy, and let me tell you~ there is no stopping him. He is always on the go. Thank God for that.
Last week he had his hearing tested here in Red Wing. It seems as though it has gotten worse since his last test. We thought that this would happen after that last high dose chemo that he had. We will have a final test done in Minneapolis before he actually gets his hearing aids. One bad thing is that Lucas hates having people even look in his ears, so I am not sure how we are going to get him to wear them. Maybe after realizing how much better he can hear he will be okay with it.
We did not make it to Underwater World like we had planned. When we got up there, they had closed early because they had to set up for the "tunnel of love". They were having a Valentines Day dinner the following day. Lucas was so bummed, so I took the boys shopping instead. I think they still had fun. We will be going back up there either this Friday or next Friday. Lucas is patiently waiting to see the fish.
Thank you all for checking in. Please take a minute to sign in the guestbook. We still love to hear from you.
Kristin
Wednesday, February 11, 2004 9:02 PM CST
Things are going well!!!
Lucas had his platelets checked again yesterday and they were at 40,000. Still no transfusions. He has to get his blood checked in Red Wing next week, but does not have to go back to clinic in Minneapolis until the following Tuesday. He is also off of 2 more of his medications, and his feeds are only hooked up for 3 hours a night. This morning he woke up and ate 2 hot dogs. What a breakfast! Whatever he will eat, we are happy to give him.
Last Friday my sister and I met my Grandma at McDonald's for lunch. I saw Addison's picture on the Ronald McDonald House donation box. This is the first one that I have seen. It just gave me chills, and brought tears to my eyes. I just don't know if it is a good idea to let Lucas see it. Every time he sees his picture he thinks he is still here with us and asks us where he is. It is so confusing for him.
Lucas is so excited for Friday to come. My brother, sister, and I are going to take the boys to Underwater World at the Mall of America. A couple of their friends and maybe even my dad are going with. We took Josh and Lucas there 3 years ago, but neither of them remember it. Josh probably will once we get there. Now that Lucas is feeling good and his counts are up, we are able to take him more places.
Thank you all for checking in with us. Please make sure to sign in the guestbook.
I probably will not check in again before Saturday, so I hope you all have a
HAPPY VALENTINES DAY!!!!!!!
Kristin
Tuesday, February 3, 2004 4:02 PM CST
Today Lucas had his platelets checked and they were at 38,000. On Tuesday of last week they were only 30,000. For a little while, we were starting to think again that the IVIG was not working. I still think that the Retinoic Acid (chemo med) has something to do with the platelets going down. At least they are back up this week. Please pray that this continues to be the trend. He is still so full of energy. Josh has basketball tournaments all weekend, so Lucas is pretty excited about that. He loves to be there to cheer him on.
Last week I had another emotional night with Lucas. The boys and I were just laying on the couch watching T.V when out of the blue Lucas started to cry. When I asked him what was the matter, he told me that he needed his buddy Addison. He sat and cried for about 5-10 minutes. He asked me if he could go see his buddy in heaven and then come back home. I too miss him so much and wish that were possible. He hates to see me cry, but every time he asks these questions I too end up crying.
Lucas still has so many unanswered questions. Well, we all do. This just proves that Addison is never far from his thoughts. We were all so blessed to have him in our lives. He was the most wonderful buddy that anyone could ever have.
We love and miss you so much Buddy Addison!!!
Thank you all for checking in. Hopefully next week we will have more good news about his platelets.
Kristin
Friday, January 23, 2004 10:58 PM CST
YES!!!!!!!!
Lucas had his platelets checked in Red Wing today, and they were up to 45,000. That is the highest they have been in a long time without a transfusion. I guess we were wrong, it seems as though the IVIG is working. They have decided to give him another dose on Tuesday. We are all so excited. I hope and pray that they continue to go up on their own.
Thank you so much for writing in the guestbook. It means so much to know how many of you are still with us.
I will update again after we get Lucas's blood checked on Tuesday. Please pray for good news.
Kristin
Friday, January 16, 2004 6:51 PM CST
***Update 1/19/2004***
Just wanted to let everyone know that Josh had his basketball tournament on Saturday in Chisago Lakes. They won second place, and did a great job. You would think that they would be happy, but they all wanted that first place finish so bad, and they only missed it by a few points. I am so happy that they did so well and would like to tell them all "Congratulations."
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Thank you to everyone for checking in. So many have been on the website, but not all of you sign in the guestbook. We love to read your entries to Lucas, so please write in if even to just say "hi".
Today Dave had to take Lucas in to get platelets. It doesn't seem as though the IVIG is working. The next step is to do something called platelet tagging. They will remove the few platelets that he has, and radiate them to watch where they are going. He is obviously loosing them somewhere. His marrow is producing them, but they don't show up when he has blood tests. It has been almost 15 months since he had his stem cell transplant, so his blood counts should be back to normal by now. Hopefully we will get some answers soon.
Lucas is feeling great. That is what matters the most. We started the Retinoic Acid again on Tuesday. He will continue taking it for the next 2 weeks. I am not sure when he will have scans again. We are very hopeful that we will get good news. Every time we have a scan the results are better than the previous one. We continue to believe that the next will be even better. As many of you have said, Lucas is a miracle child.
Thanks again,
Kristin
Thursday, January 8, 2004 3:57 PM CST
On Tuesday, Lucas received his first treatment of IVIG. This is an injection that he will receive to try and help his body produce platelets. He will have his next treatment on Tuesday of next week. Today Dave took him to the Red Wing hospital to have his platelets checked, and they were very low. This could have to do with the bacteria that he has. The bacteria is known to depress his counts. Besides, this was his first treatment. We can't expect results right away. No matter what, we continue to pray that this will eventually work. Lucas has proven to us that all things are possible, and never to give up hope.
Tomorrow I will be taking him up to the U of M to receive another platelet transfusion. He did not get any on Tuesday in hopes that the injection would take effect right away.
The good news is that Lucas is feeling good again. He is still trying to eat. His favorite is still beef lunchmeat. At least he got hooked on something other than candy or junk food. He has also been drinking a lot of milk. Now all he needs are some fruits, vegies, and maybe put that lunchmeat on some bread. Hopefully with time he will learn to like more foods.
I know that I have not been the greatest at updating as soon as I should, but I thank all of you that still continue to check in with us.
Kristin
Thursday, January 1, 2004 8:20 PM CST
***UPDATE***
1/3/2004
Just returned home!! Lucas had to be admitted to the U of M yesterday. We spent the night there and were able to go home today already. Lucas was so happy to see all of his nurses. He spent most of the time talking to them and playing in the play room, which he refers to as the "Big Huge". He had a bacteria in his hickman line. We have to give him IV antibiotics every 8 hours. The doctors said that about 70 percent of the time, this kind of bacteria will go away with antibiotics. If not, he will have to have his line replaced. Hopefully it will not come to that. Thanks again, it means so much to know that you are all continuing to check in.
Kristin
Happy New Year!!!
Well, at least to all of you. Lucas had to be admitted to the hospital here in Red Wing yesterday. He had a temperature of 103.2. The doctors ran blood cultures, and are keeping a close eye on him. They are in contact with the doctors up at the U of M. They seem to think that he has influenza, or some sort of viral infection. He is on IV antibiotics right now. That is why he needed to be hospitalized. All that he wanted to do yesterday was lay around. He started to perk up a little bit lastnight after the first dose of medication. Today he is like a new kid. Full of energy and plenty of laughs. His temperature is also back to normal.
The poor little guy is already sick of being in the hospital though. He told us tonight that he was going to buy a new car and run the hospital over so that he could go home. He wanted to go stay at the U of M instead, but we thought that it would be easier to stay closer to home, as long as the doctors were in close contact. If it turns out to be something more serious, then we will go up there for sure. Fortunately, it does not seem to look that way.
Today Lucas has been remembering things that certain nurses in Minneapolis would do. Little things, like calling him funny names (Carol), and a nurse who would always forget her name badge or stethascope in his room (Crista). We can't forget our lip skin nurse (Sarah). Just to explain: the chemo medication that Lucas is on makes his skin very dry. Lucas would literally peel chunks of skin off of his lips and throw it at her to gross her out. Well, gross all of us out. I know that this is disgusting, but it just proves how much these doctors and nurses care about these kids. They will go to extremes just to get a smile out of them. He misses all of the nurses who took care of him. Of course he mentioned wanting his favorite nurse there to take care of him (Mandy). There have been so many times that we will be sitting around, and he will ask me if I remember something that happened there. The smallest things stick in his mind. You all have a special place in his heart. One that he will hold there forever.
Hopefully if all goes well, he will be able to come home tomorrow. I will update soon to let you all know how he is doing and what the blood tests show.
Happy holidays, and should this year be better than the last.
Kristin
Sunday, December 28, 2003 6:13 PM CST
I apologize for the delay in updates. We have been so busy with Christmas this year.
I will start off with the MRI results:
It looks like there is a lot of what the doctors call "SLUDGE" in his gallbladder. This could be from all of the blood products that he is getting. When a person receives so many blood or platelet transfusions, this "sludge" tends to collect in the gallbladder. Lucas still gets platelet transfusions once a week, and blood once every 2 months. They are going to watch it closely so he doesn't get backed up again. The yellow is all gone and he is feeling great again. His feeds have stopped during the day and he is starting to eat different foods. Now he is only hooked up at night.
The boys had a great Christmas. Lucas refers to Santa as the Christmas Guy. He asks us every day if the Christmas Guy is going to bring him more presents. One of his favorite presents was his Batman watch that we bought him. He has not taken it off since he opened it on Christmas day. The first question he asked is if the watch was for him or for Addison. This is all so hard for him to understand. On Christmas day Lucas had been thinking of his buddy. He wanted to play Addison's CD that Deb had made. She gave us a copy because the song mentions his buddy Lucas. While we were in the car I looked in the back seat, and Lucas was singing along with the biggest smile on his face. He is sure proud of that song. He misses his buddy so much. We all do.
Please say an extra prayer for our friend Deb and her family. Not only did they have to deal with the death of their son, but now her mother has cancer. This family has been through so much.
Thank you for hanging in there while we have taken so long to update. Your thoughts and concern have meant so much to us.
Kristin
Monday, December 15, 2003 9:42 PM CST
***UPDATE: Tuesday December 16, 2003***
No definite answers - again. I am getting so tired of waiting and not getting answers to these problems. It could be that he has gallstones. How could this be when he has not been eating? Or it could be scar tissue in his gallbladder. We have to go back in on Thursday for a scan like an MRI to look closer, and hopefully find out what this blockage is.
Today Lucas is singing and dancing around. He is even eating. He has not once complained of any pain. This is why I do not believe that he could have gallstones. Even though he is not passing them yet, you would think that he would still have some pain.
I really don't know anymore. I just need some answers. Not only to this, but also to the platelet problem. I will update again after the tests on Thursday.
Thanks again
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Lucas woke up yesterday morning with yellow in his eyes. Before he went to bed lastnight they got worse, and his skin started to turn yellow too. I called the doctor and she told us to bring him in right away in the morning. So today we spent 8 hours at the U of M going through tests. He had several blood tests done, an ultrasound, and a CT scan. We should get the results of the CT scan sometime tomorrow.
The ultrasound did not show anything obvious. It is possible that he did not pass all of the contrast that he had to have for his upper GI last Tuesday. When it is inside of a person for this long it turns into a cement-like substance. This would cause him to have an obstruction in his bowels, and could possibly explain the vomiting and pressure on his liver.
Some of the liver tests that were done will tell if he has an infection in his liver, or possibly a virus. A normal persons Bilirubin is between 0.2 to 1.3. Today Lucas's Bilirubin was 10.0. This should give you an idea of how yellow he is. The doctor told us that if she had not seen with her own eyes how much energy he had, or how well he was doing otherwise, she would have admitted him into the hospital today.
I started to feel the fear that I had a year and a half ago. I don't think that feeling will ever go away when we have days like this. I can not stand waiting for test results. The time seems to go by so slowly when you are waiting for something. I just pray that it is worth the wait and we have good results.
Please say a prayer for him.
Thank you,
Kristin
Saturday, December 13, 2003 1:53 PM CST
Thank you to everyone for checking in with us.
The last couple of days Lucas has been sick. I don't know if it is the flu or if it is just from his Retinoic Acid. He has gotten sick from this medication in the past, but it has never lasted this long. Thank God he is not running a fever.
Both of the boys are so excited for Christmas. Especially Lucas since he was not feeling so well last year during the holidays. He was not able to enjoy Christmas like he will be able to this year. He has so many toys that even he doesn't know what he wants. We have a few ideas that we think he will like.
We will be meeting with someone from the preschool readiness program next Friday. Since Lucas is somewhat hearing impared, he should qualify for this program. Through this program, there will be someone coming to the house to work with him. He is just not ready to go to preschool yet, which is very understandable.
Please continue to sign in the guestbook, and don't forget to check out the new pictures in the photo album.
Thanks,
Kristin
Tuesday, December 9, 2003 6:34 PM CST
FINALLY - NEW PICTURES!!!!!!!!!!!
Sorry it has taken so long, but I was finally able to get the pictures down to a reasonable size. Please sign the guestbook as you are checking them out. We still love to hear from you.
Today Lucas had an upper GI done. Everything looked good. He even had an appetite after not being able to eat since 2a.m. Maybe if they decrease his feeds he will start eating more.
Last week I took Lucas in for a preschool evaluation. Overall he did okay, but there are some areas that we need to work on. Taking directions from someone else was the major one. He wants to go to school so bad. He keeps talking about basketball. I don't think that he realizes that he will be there to learn other things too. We have decided to have someone come to the house to work with him before we even think of putting him in school.
Last week I had a very emotional day. Lucas asked me if he was going to be on the radio. (Those of you who do not know - we did an interview with KS95 for their anual radio-a-thon.) I told him that he probably will, and he continued to ask me if Addison would be too. I looked at him, but did not say anything. I guess I was kind of shocked. I thought he understood that he was in heaven. After he realized that I was not answering, he asked me if he was going to die too. I was not sure if I heard him right so I asked him again what he had said. He repeated the words, "Am I going to die?" I could not believe that he was asking me this. I knew that this question was going to come up, but who would have guessed that it would be now when he is doing so well. With tears in my eyes I told him that he is better and the medicines are making the cancer in his tummy go away. He then sat on my lap with his head on my shoulder for a half an hour. His question was emotional for both of us.
I wish that I could guarantee that his cancer will never come back. Right now, all that I can do is pray to God that it won't. Lucas has fought this long, he can't loose the battle now.
HE WON'T LOOSE THIS BATTLE - NOT NOW OR EVER.
Thank you for checking in. Please sign in the guestbook. We read the entries daily.
Kristin
Monday, December 1, 2003 9:20 PM CST
Thank you to those of you who have been faithfully checking in with us even though I have not been doing the greatest job of updating. I have the new pictures on a disc, now I am having troubles putting them in the photo album without one picture taking up the whole page. One of these days I will figure it out. Hopefully soon!!!
Today we bought a batman ornament and put it next to the angel on our Christmas tree. I felt that this was one way for us to honor our buddy Addison. We miss him so much. I just wish that there was more that we could do. Please say a prayer for his family this holiday season. And also for all of the other families that have to be without their children.
Tomorrow Lucas and I will be going to the U of M to do an interview with KS95 for their anual radio-a-thon. I know that I am one of several parents to do this, but I feel so honored. It will mean so much to me if I could help raise the slightest amount of money for the Childrens Cancer Research Fund. We need to find a cure for this deadly disease. It has taken so many wonderful children from us.
I think back 2 years ago before we found out that Lucas had cancer, and I remember listening to KS95. I remember feeling so sad that I had to turn the station. I never imagined that I would one day be a parent in that same situation. This only proves how quickly your life can turn around. You never know what to expect. Cherish every moment that you have with your children. Give them an unexpected hug or a kiss. Don't be afraid to tell them that you love them 50 times a day. I'm not. Sometimes my kids hear and say it so much that they tell their doctors, nurses, and friends "I love you" by mistake.
Live life to its fullest. Enjoy the time that you have.
Kristin
Tuesday, November 25, 2003 6:50 PM CST
Today we spent 10 hours at the hospital. Lucas had an endoscopy and a colonoscopy done. They are trying to figure out why his platelets are not going up on their own. He still needs to have platelet transfusions once a week. All that the doctor could see today was that there is a spot that looks like a blood blister. The scope could only go so far, so they could not get a very good look at it. It is possible that this spot is caused from having low platelets, or it could be something else. A very long day with no answers. The doctors will discuss what tests they plan on doing next. They may have him try a new procedure where he swallows a capsule, which is actually a very small camera. This too is only a possibility.
I am sorry that it is taking so long to put up the new pictures. I promise that I will get to it soon. If I do not update again before the holiday-
HAVE A SAFE AND HAPPY THANKSGIVING!!!!!!
Kristin
Wednesday, November 19, 2003 4:23 PM CST
Sorry it has taken me so long to update. Lucas and I have both had bad colds. We are fortunate that he did not run a temperature. It has been a long week, but we are finally starting to feel better.
I will be putting new pictures on soon. Last week I developed some film that I have had for some time, and came across pictures of our buddy Addison. My hands were shaking and tears filled my eyes. I couldn't even finish looking at them before I had to call Deb. They were so sweet. There were also some of our friends Clinton and Kristina from South Dakota with the boys. My uncle is helping me out by putting them on a disc so I will have them to send out to friends. Thanks a lot Kevin! I will put some in the photo album to share with everyone.
Thank you all for continuing to check in with us. Be sure to watch for new pictures within the next week.
Kristin
Sunday, November 2, 2003 10:52 AM CST
11/06/2003 update:
I was so excited that I almost couldn't wait until today to update. Lucas- I am going to apologize in advance. When you are old enough to read and happen to come upon this journal entry, I only did this because I was so happy that we are finally starting to enjoy the smaller things in life that we have missed for the past year and a half. I hope you will forgive me.
Love mom
Lastnight Lucas went potty in the potty chair. We have been waiting for so long for this to happen. After all of that time in the hospital this was the last thing that we worried about. And now finally it has happened. He is so excited about this. Now tonight we get to go shopping for new underwear. He has already told me that he wants Batman and Spongebob. I know that this probably seems like a very weird thing to talk about, but this is a very big accomplishment for Lucas.
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Halloween is already over and Thanksgiving is on it's way. Before you know it, Christmas will be here and gone. Where does the time go?
Exactly one year ago on Halloween Lucas was in transplant. Can you believe that it has been that long already? What horrible memories we have of that time. Thank God that he is here with us now, and we are able to enjoy the holidays with him!
For Halloween Lucas was Clifford the big red dog. He was going to be Spiderman, but we could not find one in his size. So he decided to carry a Spiderman bucket for his candy. He had a lot of fun, and he looked so cute.
I had his picture taken the day before his birthday, they should be back around Nov. 14th. He sat so nice, and the pictures looked great. I will put them in the photo album as soon as I get them back.
Thank you to everyone who has been signing in the guestbook. So many nurses, and friends from the Ronald McDonald House that we have not talked to in so long. We miss you all so much. Lucas had the biggest smile on his face when I was reading all of the entries to him. It means so much to hear from you.
Thanks so much for your continuous support,
Kristin
Sunday, October 26, 2003 8:05 PM CST
*****************UPDATE*****************
The results came back:
The scans showed that there is still live cancer, but it looks less active.
We are going to continue with the Retinoic Acid for 2 more months and then repeat the scans. The bone marrow biopsy showed that he is 75 percent cellular (a healthy child his age is usually around 85-90 percent.) His previous biopsy showed that he was only 55 percent, so this is a big improvement. The only problem now is that they cannot figure out why his platelets are not going up on their own. His bone marrow proved that it is making them, but where are they going? The doctors are talking about doing another scope to see if his lining of his stomach is still sore. If it is, it is possible that they are getting used up trying to heal that. If not, they are not sure what is happening with them. They mentioned trying steroids. I don't know much about these kind of drugs, but I don't think that this is what I want for him. I guess we will learn more about it when the time comes, if this is what he needs to have done in order to get better.
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Lucas had a great 4th birthday!!!
The birthday party was a huge success. So many people showed up. He got so many toys and clothes. You'll never believe what his favorite was.... a batman car with a batman and a batgirl figurine. He said that it is just like his buddy Addison played with. He saw it in a magazine one day and told me that he wanted one. After we bought it, I was worried that he wouldn't play with it. (He never really cared to play batman before.) Since Addison passed away, he has taken so much interest in it. Like I said before, I really do believe that Addison is with him in spirit.
Josh has made the basketball team. He was so excited. He had his first practice on Thursday. We are so proud of him.
Thank you all for checking in with us. Please sign in on our guestbook. It means so much to us and to Lucas. Your support has meant more than you can imagine.
Also we would like to thank all of the doctors and nurses at Fairview University. Because of you, Lucas was able to enjoy his 4th birthday. He always tells us that you made him better.
Thank you all,
Kristin
Monday, October 20, 2003 10:49 PM CDT
The days have gone by so slowly. There has been a change in the schedule, the bone marrow biopsy will be on Wednesday and the scans will be on Thursday. We should still find out the results of the scans on Monday the 27th. I have been so nervous. I don't feel nervous to find out the results, maybe that is because I believe that they will turn out good. I am more nervous about the sedation for the bone marrow biopsy. I hate seeing my baby fall asleep like that. He gets so scared when they put the propofal in his line. He knows exactly what is going to happen and it really scares him.
Today I took both of the boys to get their hair cut. Lucas is always so scared at first. I think that he is afraid that his hair will not come back. After he gets up in the chair, he sits so nice. He was so proud today after he was done. Both of the boys looked so handsome.
Lucas has been talking about his buddy Addison so much lately. There is a reason that God brought Addison into our lives. I believe that our angel Addison is watching over Lucas right now. Maybe Lucas can really sense his closeness.
I will update as soon as I find out results.
Thank you for checking in,
Kristin
Wednesday, October 8, 2003 7:40 PM CDT
Sorry it has taken me so long to update, but between work and taking care of the boys it is hard to find time.
Lucas will have scans and a bone marrow biopsy on October 21st and 22nd. We will find out the results on October 27th. We are so nervous, but continue to believe that there will only be good news. He is doing well and is so full of energy.
Josh is continuing to do well in school. He is trying out for traveling basketball this week. We will find out next week if he made the team or not. He is very good. I am sure it has a lot to do with all of the practice that he had at the Ronald McDonald House. He spent most of his time in the gym playing with his friends.
Please pray for good test results. I will let you know as soon as we find out the good news.
Thank you for all of your support!
Kristin
P.S Please wish Lucas a Happy 4th Birthday on October 25th!!!
WE LOVE AND MISS YOU BUDDY ADDISON. WE THINK OF YOU DAILY.
Saturday, September 20, 2003 4:13 PM CDT
On Saturday September 13th we attended the funeral of our dear buddy Addison Jasper Toivola. It was one of the hardest things that I have ever had to go through. Lucas and Josh went with us. Lucas did not really understand why we were there. During the church service Lucas yelled out that he wanted to go home. I explained to him that we needed to sing a few songs for his buddy. It was like he really understood at that time what I meant. He sat there so quiet and listened to the song. After a while he layed down and fell asleep. I was kind of glad, because I was worried about how I was going to explain everything at the burial. There was an open casket at the visitation, but I did not take him anywhere near it. That is not the way I want him to remember his buddy. Besides, he is way too young to understand.
Everything was very beautiful. Everyone was wearing batman stickers and most were wearing a batman shirt under their jackets. Batman himself was waiting at the church to walk in with the casket. Lucas asked me if Addison drove a car to heaven and I told him that his buddy always believed that he was batman, so maybe he got to ride in the batmobile. He then asked me if he got to drive it. I told him that he probably did.
Today the boys and I are staying at the Ronald McDonald House with Deb, Ashley, and Austin. They came here for an appointment that was previously made for Ashley. We are going to stay here with her until tomorrow. It has been a very emotional time for both her and I. There are a lot of memories here. As for the boys, they are enjoying spending time with the kids. They have been on the go since we got here.
Next week Lucas will start Retinoic Acid again. After 2 weeks, he will have another CT scan. Hopefully there will be nothing but good news to tell. He is doing very well. He sure does miss his buddy though. There are certain faces that he makes at us and then he tells us that Addison did that. They were so close, and he loved him so much. We all miss him so much.
Thank you so much for checking in. You all mean so much to us.
Kristin
Wednesday, September 10, 2003 12:12 AM CDT
It is very hard for me to have to say this, but we lost our dear buddy Addison yesterday to his long battle with cancer. He was Lucas's best buddy in the whole world. Not a lot of 3 year olds make a friend like that. He was an amazing boy. After all that he had been through, he always had a smile on his face. You meet a lot of people throughout your life, but this family is one that I personally will never forget.
The hardest part was telling Lucas. How do you explain something to a 3 year old that you do not even understand yourself? I told Lucas that Addison went to heaven to be with God. He smiled and told me that God will fix him and make him better, and then he will come back. If only this were true.
Please understand that it is very hard for me to write today. I will update again soon.
Thank you for understanding,
Kristin
WE LOVE YOU ADDISON, AND MISS YOU SO MUCH!!!!!!!!!!!!!!!!
Tuesday, September 9, 2003 6:54 PM CDT
It is hard at a time like this to tell you how well Lucas is doing. Our best buddy Addison is going through a very rough time right now. He needs all of your prayers, and most of all he needs a miracle. Through all of this he has been Lucas's hero. Even at the most critical times in Lucas's treatment, he always talked about his buddy. Addison is his friend of a lifetime, someone that will always hold a special place in his heart. Someone like that is never forgotten.
As most of you know, Addison is our super hero ( aka - Batman ). He is one of the toughest little guys that I have ever met. Even after all that he has been through, he always had a smile on his face. Please take this time to say a prayer for him and his family. They are the most amazing people that I have ever met.
I will update again soon. Please understand why this is such a hard time to write more.
Thank you for your understanding,
Kristin
Wednesday, August 27, 2003 7:14 PM CDT
Sorry that it has been so long since the last update. Last Thursday Lucas had another CT scan. The live spots have not gotten any bigger. Possibly even a bit smaller. He started back on his Retinoic Acid again lastnight. Hopefully this will take care of what is left. He has been in a great mood lately. Trying new foods and playing outside all of the time. He has so much energy now.
On Sunday we went to the hospital to visit our buddy Addison. It was very hard for Lucas to see him in so much pain. He knows what it is like to feel such intense stomach pain.
I would write more, but I have Lucas pulling on my arm wanting to play. I will try to update sooner this time.
Thank you for checking in,
Kristin
Wednesday, August 13, 2003 7:32 PM CDT
Lucas is continuing to do well. He has his down days, but being home has helped so much. Dave is taking him to clinic twice a week to get his blood checked and the occasional blood and platelet transfusions, and I am still back to work. He is trying new foods, but doesn't always keep them down. He actually has an appetite now. Josh is also doing very well, even though he is not too excited about going back to school in a few weeks.
Even though everything is going well for us, our buddy Addison needs your prayers. A couple of weeks ago they got some bad news. It seems as though his cancer has gotten worse. New chemo is being started in hopes to shrink it. In our many months of stay at the Ronald McDonald House, our families have grown very close. Lucas was able to make a best friend of a lifetime, and Dave, Deb, Austin, and Ashley have been comfort to all of us. This is really an amazing family, I just wish that there was more that I could do for them at this time.
Thank you all for checking in and supporting our website. I will try to update more often.
Kristin
Monday, July 28, 2003 4:43 PM CDT
The Results Are In..........
Today we received the results of Lucas' tests. His bone marrow biopsy still shows no evidence of Neuroblastoma. It also showed that his marrow is 80% cellular which is almost normal for a child his age. The MIBG scan showed that the large mass is now only the size of a quarter and shows no live cancer cells. The only bad news was that he still has 3 small spots above his kidney that are still showing live cells. These spots are very small and do not even show up on a CT scan.
The next step is to start him on a new medication that will turn the cancerous cells into normal mature cells. Hopefully this will take care of the rest. He will not start this medication for at least 2 weeks. They want his stomach to heal before starting. The biopsy of his stomach did not show any sign of a virus. There are still tests pending, but they think the tenderness is from the chemo and medications. With his counts going up, this should start to heal.
At first we took this all as bad news, but the Dr. reassured us that this is actually very good news. The antibodies did exactly what they were supposed to do. She sounded pretty hopeful that this next treatment will work. The good thing is that this medication can be given at home.
All in all, Lucas is feeling pretty good. He has a lot more energy, and is starting to wear us out. His stomach pain is decreasing and he is slowly trying different foods.
All of your encouragment has gotten us through some rough times. Our family has been through a lot lately, and you have all continued to show us your support. Your thoughtfulness has made a big impression on our lives.
Thank you,
Kristin
Monday, July 28, 2003 4:22 PM CDT
The Results Are In............
Today we found out the results of Lucas' tests. The bone marrow biopsy still showed no evidence of Neuroblastoma cells (which has been the case all along). It also showed that his marrow is 80% cellular, which is almost normal for a child his age. The MIBG scan showed that the large mass is now the size of a quarter and showed no cancer cells. The only bad news was that there are still 3 very small spots above his kidney that still light up as Neuroblastoma on the scans. They are improved from the last scan though. The plan is to start another medication that will turn these cells into mature normal cells. We will not start this for at least 2 more weeks to give his stomach time to heal. The biopsy of his stomach showed no evidence of viruses. It will just take time for it to heal from the chemo and medications that he has been on.
At first we took this as bad news, but the Dr. reassured us that this is actually very good news. He has shown much improvement after the antibodies were given. Hopefully this medication will work and take care of the rest. The spots are so small that they do not even show up on a CT scan.
All in all, he is doing very well. He seems to have more energy now that his counts are going up. He is also having less stomach pain.
Thank you all for your words of encouragment. You have helped us through some very rough times. Without your support, we could never have the strength that has gotten us this far.
Thank you all,
Kristin
Thursday, July 24, 2003 4:27 PM CDT
Yesterday Lucas had his bone marrow biopsy and his endoscopy. We found out that he does not have an ulcer like they thought. His stomach looks pretty raw, but they are not sure why. Today he had all of his scans. The results should be in on Monday. 4 more days of waiting. That has got to be the hardest part - the waiting game. It was not as hard for him to go back to the hospital as we thought it would be. He actually had a good time visiting with all of his favorite nurses and his buddy Addison.
As if things couldn't get any worse, my grandmother on my dad's side went to the hospital last Sunday with chest pains. They think that she has shingles. Dave's aunt found out that she has cancer, and his uncle was air lifted to Rochester with chest pains. Just when you think that the worst is over, you get hit with more bad news. Hopefully the good news will come on Monday when we find out the test results.
Please pray for some good news, we could sure use some. I will update as soon as we find out.
Thank you,
Kristin
Wednesday, July 9, 2003 4:16 PM CDT
Lucas went in for a scan today to see why he is having so much stomach trouble. The doctors are almost positive that he has an ulcer. That would explain why he doesn't want to eat and has been hurting so much lately. He will be having further tests to make sure that this is the case, but we are not sure when that will be. Possibly when he is being sedated for his bone marrow biopsy later on this month.
For the 4th of July we took the boys to the fireworks in Red Wing. Lucas had a blast. He was screaming "Wow" after every one. On Monday we tried to take him to the circus that came to town, but he was terrible. The doctors think that he is having withdrawls from his pain medication, but I think the opposite. I think that he is on too much. They are decreasing his pain medication patch slowly because of these problems. Once he is off of it completely, I think he will be feeling a lot better. That is- after they treat him for his ulcer. He has these spells where he is mad at everyone, and we are afraid that he is going to hurt himself. He hits his head against the walls, kicks his feet, and screams. This usually goes on for a couple of days after we put a new patch on.
Last Sunday we went to the Ronald McDonald House to visit Lucas' buddy Addison. They had so much fun playing together. Addison was very unhappy when we had to leave. They have become very close over the past year and a half.
Thank you all for checking in. I will update again as soon as we find out when the next scans will be.
Kristin
Sunday, June 29, 2003 8:35 PM CDT
Lucas is still home and doing well. He has had an upset stomach and has been getting sick a lot. If he keeps busy, he seems to forget about it. We took him to the parade in Lake City today. He enjoyed watching the horses the most. We have been spending a lot of time outside. Lucas loves to ride his battery opperated Jeep around the yard. He runs into the house every once in a while, but otherwise he is a pretty good driver. Most would say that he is probably better than his mom.
Tomorrow he has another clinic appointment. He will probably need to get a blood and platelet transfusion. They are talking about doing another scope when he is being sedated for his bone marrow biopsy is July. Since he has been getting sick so much, they want to make sure that everything internally is still okay. He will also have all of his scans done either the day before or the day after the biopsy. I am so anxious but yet so scared to find out these results. These tests will determine what is next. Hopefully all will go well, and he will not need any more treatments. Until then, I will be driving myself insane wondering what the tests will show.
Thank you all for checking in. We do not have a computer yet, so I have been trying to get over to my mom's house as often as I can to update. We appreciate everyone's support and will continue to let you know how Lucas is doing.
Kristin
Sunday, June 22, 2003 7:37 PM CDT
Finally some new pictures...
Sorry it took so long, but boy have we been busy. Yesterday we moved our stuff out of the Ronald McDonald House. We filled up Dave's dad's truck. Now the challenge is trying to find a place for all of it.
Lucas only has clinic appointments twice a week, so it really wasn't worth keeping our room when Dave can drive him up there in the mornings. Besides, Lucas is so happy to be home. It was hard to say "goodbye" to our good friends at the Ronald McDonald House though. Especially Addison and his family. We will for sure stay in touch with them.
Thank you all for checking in. I will continue to update even though we are at home. Our next scans will be sometime in July. We are not yet sure of the date. I will let you know as soon as we find out. These scans will determine whether or not he will need further treatments.
Don't forget to check out all of the new pictures in the photo album!!!!!!
Kristin and family
Monday, June 16, 2003 5:14 PM CDT
STILL ON THE RUN!!!!!!!!!
Lucas is still out of the hospital and doing great. He often talks about his favorite nurses. Even though he is happy to be home, he misses the people that helped him get here. He is still able to spend a few nights a week at home. The rest of the week is spent at the Ronald McDonald House while he still has frequent clinic appointments. He still needs to get platelet transfusions every couple of days.
I have finally developed my film, and I am very excited to get the pictures on the site. I should have time sometime later in the week. Lucas and Josh were very photogenic and took some very nice pictures.
All in all, Lucas is doing very well. He is still having some stomach pain, but that is also getting better over time. Please take some time to write in and say "hi". Even though we are between places during the week, we still take the time to read all of your comments.
Thank you for all of your support,
Kristin
P.S My grandpa is still in the hospital after his triple bypass. He is recovering slowly but surely. My family and I appreciate all of your prayers and concerns.
Wednesday, June 11, 2003 5:21 PM CDT
STILL OUT OF THE HOSPITAL...
Lucas has not been feeling the best lately, but he is still out of the hospital. He has been staying at the Ronald McDonald House this past week. We wanted to take him home, but we figured that it would be better to stay close to the hospital just in case we had to take him in. After being able to go home for a few days last week, that is the only place that he wants to be. Hopefully soon he will be able to go home for good.
My grandpa had to have a quadruple bypass done today. I have not heard anything yet, but I am sure that everything went well. He is a very strong man.
Sorry to make this so short, but the time that I have to spend with Lucas goes by so quickly.
Thank you for checking in with us,
Kristin
Friday, June 6, 2003 8:20 PM CDT
Lucas is getting out of the hospital tomorrow and does not have another clinic appointment until Monday. This means that he will be able to go home for a night. He is so excited. He is out on a pass until 10 p.m tonight, and is tearing up the Ronald McDonald House.
No scans will be done until July. Lucas will continue the chemo medication (Cis Retinoic Acid) until then. After the scans are done we should find out what will be next. It would be great if we found out that everything worked and we are finished with treatments. I am worried sick about this. Please pray that these treatments are working.
Just when we were hoping that our streak of bad luck was over... my grandpa (my mom's dad) has to go to the Mayo Clinic on Monday morning to have an angiogram. This is the test that my mom had done right before they decided that she needed a triple bypass. I know that I have been asking for a lot of prayers from everyone lately, but he could sure use one too.
Thank you to everyone for all of your support for our family.
Kristin
Wednesday, June 4, 2003 5:24 PM CDT
ANTIBODIES ARE GOING FINE!!!
Lucas has been doing very well with this round of antibodies. He has been sleeping a little more during the day, but still has energy to play. The doctors say that he should be able to go home on Saturday.
Josh is very excited that tomorrow is the last day of school. Hopefully Lucas will be home to enjoy the summer with him.
Sorry to be quick, but I have to get up to the hospital. Thank you for checking in with us, and please take a minute to sign the guestbook.
Your support has been greatly appreciated,
Kristin
Sunday, June 1, 2003 7:54 PM CDT
BACK IN THE HOSPITAL....
Lucas had to be admitted into the hospital tonight to prepare for his last treatment that will begin tomorrow morning. We thought that it was going to be a struggle taking him back, but he already began flirting with the nurses and made himself at home in his new room. He is adjusting well knowing that he will not be here as long as he was the last time. If all goes well, he should be out by Friday or Saturday.
Lucas is very excited that his buddy Addison is here in the hospital to keep him company. He has really missed him lately. We are all very lucky to have met such a wonderful family.
I will keep everyone updated on how well the treatment goes. I promise that I will have some new pictures on soon. I have been very busy, but will find some time to get the film developed.
Thank you to everyone for checking in!!!
Kristin
Tuesday, May 27, 2003 8:05 PM CDT
FEELING GREAT!!!!!!!!!!
Lucas was able to come home for a couple of days this weekend. I was so suprised yesterday when I walked out into the living room, Lucas was sitting on the floor eating a box of Nerds. He had the biggest smile on his face and he told me "Now I am eating and I can get my tube out." I tried to explain to him that he needs to eat good food before it can come out. On the way back to the Ronald McDonald House he ate part of a hot dog and a couple slices of lunch meat. This was a very big deal since he hasn't eaten in over a year.
Yesterday was Josh's 10th birthday. We had a party for him on Sunday. He is very anxious to go shopping with all of his birthday money. I think it is burning a hole in his pocket. Lucas did not like the fact that it was only Josh's birthday. He told us that it was his birthday too. We had the same problem on Mother's Day.
My mom is recovering well and came home today. Her and Lucas were sharing their surgery stories. Lucas told her that God will help her get better too, but it takes a long time.
Lucas is so happy to be out of the hospital. He went fishing for a little while with Dave yesterday. That did not last very long. He had a tummy ache and wanted to go home. He has been in very good spirits. Yesterday on the way back to the Ronald McDonald House he kept telling everyone "Merry Christmas." I guess after being in the hospital as long as he has, it was kind of like Christmas.
Thank you to everyone for all of your prayers for my mom. Your prayers have worked wonders for our family. Your support has been greatly appreciated.
Kristin
Friday, May 23, 2003 5:07 PM CDT
GOING HOME!!!!!
Tonight will be Lucas' first night home in almost 8 months. He is still feeling sick, but we are hopeful that being home will help take his mind off of his stomach. He is less likely to get sick when he keeps busy. I can't wait to see how he reacts when we get there. I will let you all know how things go.
My mom had a procedure done today to see if there was any blockages to her heart. There was and she went in for surgery right away. They ended up doing a triple bypass. I hope that she has a quick recovery and is home soon. She will be spending the next 5 to 7 days in the hospital for sure. She could use an extra prayer today.
Lately I have been wondering how much more our family can take. I hope that our streak of bad luck is over.
Thank you for all of your support. Please take a minute to sign our guestbook. We love reading what everyone has to say. Even a simple "hello" means so much.
As always - Thank you,
Kristin
Wednesday, May 21, 2003 7:10 PM CDT
Sorry about the short update, but it has been a tough couple of days. My mom had a heart attack and was air lifted to St. Mary's hospital in Rochester yesterday. We went to visit her yesterday and she was doing pretty well considering what she had been through. She got out of Intensive Care today, so we will head back down there to see her again tomorrow.
On the bright side, Lucas is getting out of the hospital tomorrow. We will have to stay at the Ronald McDonald House, but that is okay. He is so excited to be able to sleep over there. It has been a long time. I promise, I will put new pictures on soon, I have just been so busy running from one hospital to another that I haven't gotten a chance to develop my film.
Please say an extra prayer for my mom.
Thank you for all of your support, especially at a time like this.
Kristin
Wednesday, May 14, 2003 6:42 PM CDT
DOING GREAT!!!!!!!!!!!
Lucas has been able to get out of the hospital on a pass every day this week. He is out for most of the day. The feeds have started again over night, and he is unhooked from everything during the day until 8 p.m. He is finally feeling good again. This had to be one of the best Mother's Day presents ever. Well of course, next to the card that Josh made me in school.
I gave Lucas his first haircut since his hair came back. He was so excited that he moved his head and I cut the sides a little shorter than I had planned. Lucas told me not to say "OH NO" when I am cutting his hair. So I gave him a mirror and asked him if he liked it, and he told me "No, not really". We are all getting a little more used to it now. I was more worried about what Dave would think. I told him that it could have been worse, I could have cut his ear off. Every time someone tells Lucas that they like his haircut, he tells them that he moved his head, and gives them a demonstration. Hopefully next time he will know not to do that. Or maybe next time I should just bring him to a salon.
Please say an extra prayer for our Buddy Addison and his family. He is having a very critical procedure done on Thursday in hopes to shrink his cancer. His website is listed at the bottom of the page if you would like to check it out.
Thanks again,
Kristin
Saturday, May 10, 2003 2:06 PM CDT
HAPPY MOTHERS DAY!!! (TOMORROW)
The antibodies are finally done. The past 2 weeks sure went slow. Lucas is still getting sick, but he is feeling so much better. We got a pass to get out of the hospital from 12:30 this afternoon until 8:00p.m tonight. He was so excited to get over to the Ronald McDonald House. He has been playing ever since we got here.
The doctors want to try and start his feeds again tomorrow. Right now he isn't even keeping water down. It usually takes a few days until he is fully back to himself.
I'm not sure when we will be able to get out of the hospital. Hopefully within the next week or two. His last treatment isn't until the first week in June, so we should be out of there before that.
Thank you to everyone for all you have done. Each and every one of you mean so much to us. Now that I am feeling better, I will try to update a little quicker this time.
Thank you,
Kristin
Wednesday, May 7, 2003 6:12 PM CDT
Lucas started his antibodies on Monday. Later that night they had to be stopped. His blood pressure went down to 54/19. They flushed him with at least 300cc of fluid, and restarted the antibodies. He was also running a slight temperature. As of today, he seems to be doing better. His blood pressure is back to normal, and he wants to play a little bit. He gets tired out very easily.
As for me, I have had to stay away for the last day. I went to the Dr. yesterday and found out that I have an ear infection. My chest hurt so bad from coughing that I was worried that I had pnemonia. Lack of sleep probably had something to do with it.
Dave had to meet with some doctors about Lucas' behavior. They were talking about putting him on a medication to help calm him down. He has been getting very upset with the nurses lately. We do not agree with that and will not have him put on any more medication. How is he supposed to act when he has been here for so long? Who can blame him?
Tomorrow is the last day of antibodies. Hopefully he will be able to get out soon after this round is over.
Thank you for everything. Please continue to sign in, even if only to say "HI".
Kristin
Sunday, May 4, 2003 4:11 PM CDT
Lucas is out on a pass again tonight. He loves being able to go to the Ronald McDonald House. He is feeling good today, but the last few days he has been getting sick a lot.
Tomorrow he starts his second week of antibodies and IL-2. He has to have an IV placed in his hand tomorrow morning. His Hickman line only has 2 ports, and 3 will be needed this week. He is not going to like that at all, but at least this is the last time that this should have to be done.
We hope that he gets through this treatment better than he did the last time. He was pretty sick, but most was probably due to the bacteria that he had.
Sorry that this is so quick, but I need to get back to the boys. I will update within a couple of days with any changes, and to let everyone know how the antibody treatment is going.
Thanks,
Kristin
Tuesday, April 29, 2003 5:47 PM CDT
Another round of antibodies-
Lucas started his next round of antibodies yesterday. He has been feeling pretty rotten. He has been sleeping a lot, and getting sick quite often. Next week could be worse. At least this is the last round like this. This one will last for 2 weeks. There is one last treatment in June.
It has been very stressful for all of us for me to be back at work. Dave is getting exhausted sitting at the hospital during the day, and Josh is tired of getting home late and up early the next day. Hopefully this will all be over with soon. We hope that Lucas will feel better more quickly after these 2 weeks are up and we can all go home. Sorry to make this short, but I will update with any new happenings.
Thank you,
Kristin
Thursday, April 24, 2003 8:28 PM CDT
Everything is looking better!!!!
Lucas had his tube replaced today. This time they put in a G tube instead of a GJ tube. This means that the only tube that goes in is the one to his stomach. So there is not one long enough to come back up this time. The preliminary results of the scans showed that there is less cancer, and that what is left is less active. The doctors were very happy with what they found.
Lucas is feeling great, and is very busy walking the halls. He loves to flirt with the nurses. His buddy Addison is here in the hospital with a fever so Lucas is not able to play with him. He just stands at his door and waves to him and cries that he needs his buddy. They have become very close this past year.
Josh is continuing to do well in school. He is catching up on all of his work. With everything that we have all been through, he is dealing with this very well. He is a tough boy, and a great big brother to Lucas.
We love to read all of your journal entries. Please continue to write. Thanks for everything.
Kristin
Tuesday, April 22, 2003 5:28 PM CDT
ANOTHER TUBE IN AND ANOTHER OUT
Lucas had another GJ tube replaced yesterday. A few hours after it was placed, he had an X-ray and it showed that it was in his neck. After some important medications were given, it was pulled out. The doctors can not believe that this has happened again. They are going to meet tonight and decide what the next step will be. Another possibility is surgery to stitch the tube into place.
Lucas calls the hospital the doctor's house. Yesterday he told me that he needs to go to a new doctors house because they are not helping him feel better. I asked him what about his favorite nurses, and he told me that they will go there with him. It was so hard to hear him say this because we know that they are doing everything possible to help him. It is all just going to take some time, but how do you explain that to a 3 year old that has been through so much.
He keeps asking God to hurry up and make him better. What do you say when he asks you why he isn't fixing him? How do you explain something when you do not know the answers yourself. All I could say is that we have to keep praying that God will be a little faster. I told him that there are a lot of people that need to get better, and that his turn is coming. There are just so many unanswered questions in our minds as well as his.
X-rays are scheduled for tomorrow to see if there is anything obvious in his stomach that is causing these tubes to come back up. There are scans scheduled for Thursday to see how much cancer is left (if any at all). We pray for good news.
We lost a very special boy named Jake at the hospital on Sunday. It is so hard to see these kids go through so much and then be taken from us. Our thoughts and prayers go out to his family.
I can not say THANK YOU enough for your kind words and prayers. Please continue to sign in our guestbook even if it is just to say HI.
Kristin
Sunday, April 20, 2003 2:21 PM CDT
HAPPY EASTER!!!
These last few days have been horrible. Lucas was having a lot of stomach pain on Thursday. His medications were coming out of his G tube, and he was throwing up his feeds. Later on that night, he started complaining of neck pain. While I was laying in bed with him he got sick all over. I saw him pulling something out of his mouth, but I never thought it would have been his J tube. He was choking on it for about 1/2 hour. This was the most horrible thing that I have ever experienced. He was choking, and there was nothing that I could do to help him. Finally a doctor came in and deflated the balloon in his stomach and pulled the tube back out. He sat for about 5 to 10 minutes with a hole in his stomach until they plugged it with a foley. If the hole stays open for too long, it will start to close up. On Friday afternoon, he had another GJ tube put in.
His feeds started back up after the new tube was put in, and now today he started vomiting them up. An X-ray showed that his tube came right back up into his stomach again. Tomorrow this tube will have to be replaced. The bad part of this is that he has to be under General Anesthesia. It is not a painful process, but it is uncomfortable and they need him to be still. The doctors have no explanation as to why this keeps happening. We are just glad that it was caught before it came out of his mouth again.
We will be getting out today on a pass for about 3 hours. The fun part will be getting him to come back to the hospital. The doctor just told us "Good Luck." He knows how Lucas is when he doesn't get his way. We will be having scans sometime this week, but I am not sure what days yet. I am very nervous. I will update as soon as we find out for sure. I am still working on getting my film developed. As soon as I do, I will add new pictures. THANK YOU!!!!
Kristin
Tuesday, April 15, 2003 7:50 PM CDT
STILL ON THE MOVE!!!
The doctors keep telling us that Lucas is doing so much better, and will hopefully be out of the hospital by the end of the week. He will probably have to stay at the Ronald McDonald House since he is still needing blood and platelet transfusions. Even that is a big step. I don't think that he realizes that he is actually going to get out. We keep telling him, but it hasn't sunk in yet. We don't want to get his hopes up too high just in case something comes up and for some reason he can't leave. We will not think that way though, HE WILL GET OUT!!!
If all goes well and he does get discharged, he will not have to return to the hospital until April 28th for his next round of antibodies. He will have scans done sometime next week to see how much this has worked for him. Hopefully the cancer will be gone, or at least close to being gone. We are so nervous to find out these results. Please pray for good news.
Josh has returned to school in Red Wing and is doing very well. It was a little hard for him to go back and leave all of his new friends, but he is learning to adjust. It was nice for him to have a little bit of his normal life back again.
I will update as soon as we find out for sure about getting out of the hospital. Thanks for all of the e-mails and entries in the journal. We read them all and appreciate the time you take to see how we are all doing. Please continue to write to us, we love to hear from you.
Kristin
Friday, April 11, 2003 6:35 PM CDT
Another one down!
Lucas made it through this 3rd round of antibodies without a fever. He slept a little more than usual, but that is about it. He is so full of energy from the moment that he wakes up to the time that he finally tuckers out and decides to go to sleep. That is usually around 1 a.m. He is quite the night owl lately. He made me and 2 other nurses cry yesterday when he got sick and cried. He said, "Tummy please get better so I can go home. I just want to feel better. Please God, just make me better." We want this for him just as much as he does. It is so hard to hear this from him, but he's not asking for much. He is just a 3 year old that wants to go home and have a normal life. All of this time in the hospital is sure taking a toll on him. He is starting to get very emotional. Please pray that God will listen to him, and make him better.
Thank you to everyone for keeping in touch with us. Lucas has loved all of the mail. I even take him into the library so that he can check out his web page. I will put some new pictures in as soon as I get my film developed. I will also update as soon as there are any changes or if we find out that we will be getting out of here any time.
Thursday, April 3, 2003 5:21 PM CST
LUCAS IS FEELING GREAT!!!
The last few days have been going very well. His temperature is normal, and he has so much energy. His pain medicine has even been turned down, and he is still doing so good. We are so hopeful that things are going in the right direction.
Monday is the start of his next round of antibodies. This one will last for 1 week. Hopefully this will go well since he has so much more strength. He is starting to act like "OUR LUCAS". He is even chasing the nurses around the halls trying to tickle them. There are so many wonderful doctors and nurses up here taking care of him.
On Monday, our buddy Addison will be up here for his next round of chemo. I am sure this will help Lucas get through next week. It is also Addison's birthday on Wednesday, so the boys will be able to spend some time together.
Thank you all for your continuous support. This has been a long year, and you have helped us get through it. Also thank you to those of you who we do not know that have shown us your concern and who are praying for Lucas. We love you all and appreciate everything.
Saturday, March 29, 2003 7:40 PM CST
Lucas started running a fever again today. It was up to 103.4, and we found out that his gram negative bacteria is back again. His blood pressure is high, so he is being watched very closely. They started a new blood pressure medication to help with that. He is retaining fluid, and has blood in his urine. It seems like everything is going wrong right now. He is still having cramps in his stomach, and he is very jaundice. Even his eyes are yellow. This bacteria is very nasty. The doctors told us that most kids with this bacteria end up in Intensive Care, but Lucas is doing pretty well as long as his blood pressure doesn't get too out of control. I have to get back to his room now, so I will update again as soon as we get any new information. Thank you for all of your prayers and support.
Monday, March 24, 2003 5:27 PM CST
Lucas has been feeling pretty good the last few days. He is always wanting to play in the toyroom and go for walks in the hall. He is constantly on the go and doesn't want to sit in his room anymore. The only thing now is that WE don't get a chance to sit and rest. The only thing that matters is that he is feeling better. It makes things so much easier when he wants to do the normal things that a 3 year old wants to do. We just found out at work that another co-worker's son has cancer. He is being treated at St. Jude's. Please pray for him and his family. I know how hard this time is for them, and I hope that I can be there for them as all of our co-workers have been there for us. Thank you to everyone for all of the fundraisers that have been done in honor of Lucas. You all have done so much for us. THANK YOU!!!
Wednesday, March 19, 2003 5:05 PM CST
Sorry it has taken me so long to update, but between work and the hospital I haven't had much time. Last Saturday we were able to take Lucas outside for a little while. I learned that it isn't easy pushing a stroller and an IV pole. Lucas was so happy just to get out, even if it was only for a 1/2 hour. His temperature has been normal the past few days. He had his GJ tube replaced today because the J part of it was plugged. So the feedings are starting again tonight. Now that we know that he can tolerate them, I hope he starts feeling better so that we can get out of the hospital soon. He has been feeling pretty good except for a stomach pain every now and then. He had also gained about 10 pounds of fluid. It was so bad that he could hardly walk. Lastnight he was put on a new medication to get rid of it and he has already lost at least 2 pounds. He is ready to get out and play with his best buddy Addison. Staying at the Ronald McDonald House will make a big difference. He loves it there. Just pray that we are heading in the right direction and he will be able to get out soon. I will try to update more frequently. Thanks again for all of your support.
Friday, March 14, 2003 5:24 PM CST
Lucas is finally finished with round 2 of antibodies. There are 3 more cycles left, but only one more like this last one. The very last cycle will be in June. Hopefully he will be feeling better and be able to go home soon to enjoy this nice weather. This is not a very fun life for a 3 year old. The past year has been spent mostly in the hospital. The last few days he has had to lay on a cooling blanket. His temperature rose to a high of 105.2 lastnight. Boy was that scary. We were told that he is actually doing well compared to other kids that have been through this treatment. The gram negative bacteria that was found in his blood was not E-coli. It was an infection called Klebsialla. After the first culture came back positive, every one since has been negative. So the antibiotics must be doing their job. This is an infection that is in his stomach. He is still having some pain, but the antibodies are in his system for 24 hours after they are done running. Hopefully he will start feeling better by tomorrow. Thanks to everyone for signing the guestbook. It is so nice to hear from all of you. We miss you all dearly, and hope to be home to see you soon.
Friday, March 14, 2003 5:24 PM CST
Lucas is finally finished with round 2 of antibodies. There are 3 more cycles left, but only one more like this last one. The very last cycle will be in June. Hopefully he will be feeling better and be able to go home soon to enjoy this nice weather. This is not a very fun life for a 3 year old. The past year has been spent mostly in the hospital. The last few days he has had to lay on a cooling blanket. His temperature rose to a high of 105.2 lastnight. Boy was that scary. We were told that he is actually doing well compared to other kids that have been through this treatment. The gram negative bacteria that was found in his blood was not E-coli. It was an infection called Klebsialla. After the first culture came back positive, every one since has been negative. So the antibiotics must be doing their job. This is an infection that is in his stomach. He is still having some pain, but the antibodies are in his system for 24 hours after they are done running. Hopefully he will start feeling better by tomorrow. Thanks to everyone for signing the guestbook. It is so nice to hear from all of you. We miss you all dearly, and hope to be home to see you soon.
Tuesday, March 11, 2003 11:31 PM CST
Lucas has been running a fever all day today. It was as high as 103 degrees. It is standard that when a child has a temperature over 100.3, blood cultures are automatically drawn and they immediately start them on antibiotics. One culture came back positive for gram negative bacteria. We do not know for sure yet, but E-coli is one possibility. Most of you are probably wondering as I was, "how could someone who does not eat get E-coli?" I asked if it was possible that it was spread through a blood transfusion, but the blood products are radiated so that should not have happened. I guess everyone has this bacteria in their body, but people with a low immune system have a greater chance of it actually getting into their blood and causing infection. The final test results that will show exactly what this is will be back within the next couple of days. This bacteria causes the blood vessels to leak, which affects the blood pressure. The antibodies and IL-2 could also lower the blood pressure. So far he has been stable, but if it does drop we could be transfered to Intensive Care. They are monitoring him every 2 hours. Lucas has been through so much and has continued to keep his strength. He will make it through this rough time too. Please keep him in your prayers.
Monday, March 10, 2003 11:07 PM CST
Lucas started his antibody and IL-2 treatment today. Because these drugs are not compatible with his pain medication, he had to have an IV placed in his hand. This will be able to come out on Friday when the antibodies are done. That is not soon enough for him though. He told me today that he wants it out NOW!!! It does not help that he is left handed, and that happens to be which hand they put it in. Now his GJ tube is plugged. They have tried everything to clear it out. The only other choice they have is to replace it with a new one. The plan is to have that done sometime on Friday. It just seems like one thing after another. It will be one year ago on Saturday since we found out that Lucas had cancer. I can't believe that it has already been that long. I know one thing for sure, it has been so emotionally draining on all of us. If it wasn't for the dedicated support of our friends and family, we wouldn't have held together this long. So many of you have asked if there is anything that you can do. Just continue to sign in our guestbook. We love to hear from you. It really means a lot to us. Thank you for everything.
Monday, March 3, 2003 7:18 PM CST
Today was day 1 of IL-2. Next week, this will be given with the antibodies. If this is going to be rough on him, next week will be the week to tell. So far he has been tolerating it well. He is getting tylenol every 6 hours to make sure he does not spike a temperature. He is still in good spirits. The pain seems to come and go, and it has really confused the doctors. The next step is to put pain medications directly into his GJ tube. Hopefully this will help. Josh is still doing very well in school. He is starting to miss all of his old friends though. Who knows when he will be able to get back to school in Red Wing. He sure has grown up a lot this past year. As always, thank you for everything. I will keep you updated.
Thursday, February 27, 2003 11:03 PM CST
So far so good. The scans showed that there is no blockage in the bowels. Everything looked good. Just to make sure, the doctors want to do another scan at another time. We are not sure when that will be. Lucas is still feeling good. He was very sad though today when he heard on the news that Mr. Rogers had died. He has been watching a lot of TV up here in the hospital, and that is one show that he watches almost every day. I have been back to work the last month, and Lucas is not very happy with that. There are some days that I walk into his room and he tells me to go away. Today I called him on my way back up to the hospital, and he apologized to me. He said that he will not tell me to go away any more. He also told me about 10 times that he loves me so so so much. That made me feel a lot better. He asked me where I was, and I told him that I was driving back up to be with him. Then he started to cry, and told me that he wants to be better so he can ride in my car with me. I told him that pretty soon he will be better and we will go for a ride. The worst part was when he told me "That's not fair mom." He's right, none of this is fair. No child should ever have to go through what so many of these children have had to. We just pray that one day this will all be over with, and he can live a life like a normal 3 year old. Please pray for Lucas and his buddy Addison. Your prayers and support have gotten us this far. Thank you for everything. It means more to us than you will ever imagine.
Tuesday, February 25, 2003 11:49 PM CST
Thank you to everyone for keeping in touch with us on our website. All you have done means so much. Lucas has been in a lot of pain the last few days. We think it is because they have started the slow feeds through his GJ tube. This causes his bowels to work harder. The doctors are finally starting to hear bowel sounds. His pain medicine was turned up again today. This sure made a big difference. He got up to take a bath, and he did some coloring out at the nurse's desk. It felt so good to see him acting like his normal self, even if it was only for the evening. Another CT scan will be done tomorrow (Wednesday) to show if there is a definite blockage in his bowels. If there is, surgery may have to be done. Hopefully this is just something that will heal on it's own. The last thing we want is for him to have another surgery. We will update as soon as we get the results of his scan. That could either be tomorrow or Thursday. It never seems like it can be expressed enough, but "THANK YOU" for your support through everything. This has been a tough battle for all of us. We would not have made it this far without our friends and family beside us.
Tuesday, February 25, 2003 11:49 PM CST
Thank you to everyone for keeping in touch with us on our website. All you have done means so much. Lucas has been in a lot of pain the last few days. We think it is because they have started the slow feeds through his GJ tube. This causes his bowels to work harder. The doctors are finally starting to hear bowel sounds. His pain medicine was turned up again today. This sure made a big difference. He got up to take a bath, and he did some coloring out at the nurse's desk. It felt so good to see him acting like his normal self, even if it was only for the evening. Another CT scan will be done tomorrow (Wednesday) to show if there is a definite blockage in his bowels. If there is, surgery may have to be done. Hopefully this is just something that will heal on it's own. The last thing we want is for him to have another surgery. We will update as soon as we get the results of his scan. That could either be tomorrow or Thursday. It never seems like it can be expressed enough, but "THANK YOU" for your support through everything. This has been a tough battle for all of us. We would not have made it this far without our friends and family beside us.
Thursday, February 20, 2003 9:04 PM CST
Sorry I haven't updated the website in a while, but nothing new has really happened until today. Lucas had a GJ tube placed in his stomach. While under sedation, a contrast was given to see how his bowels were working. The CT scan showed that there was no evidence of obvious blockage. The original thought was that there was scar tissue causing problems, which would have explained the pain that he has been having. The only thing that they could see is that his bowels are moving slower than normal. This did not seem to be a major concern. No definite answers have been given yet. An endoscopy and a colonoscopy were also done. Several biopsies were taken of tissue in his stomach and bowels. This tissue seemed to look very damaged due to the chemo that he had before his transplant in October. Those results should be back within the next couple of days. Tonight he has been feeling great. His spirits are really up. He has been teasing the nurses, and laughing at them. The last few days he was mad at everyone. Hopefully this will be a turning point for him. Since he will be able to get his meds through his GJ tube, his stomach will have time to heal, and hopefully the vomiting will decrease. Eventually we will use this tube for feedings, and the next step after that is to get him to eat on his own. The next round of antibodies will start again on March 3rd. This will last 2 weeks. We were told that this time will be harder on him than the first one was. Please pray that he will prove the doctors wrong. Thanks again for your continuous support.
Saturday, February 15, 2003 3:52 PM CST
I hope everyone got a chance to see Lucas on channel 11 news lastnight. He was so excited to see himself on TV again. The doctors had to increase his pain medicine today. He will be having an MRI done on Monday or Tuesday. This should determine whether or not he can have a G tube placed in his stomach. This will give him better nutrition than the TPN he is currently getting through his central line, and hopefully help his stomach heal faster. He will also be able to get his medications through it. If there is one thing that he can not stand to do, it is taking medicine. After smelling some of that stuff, who can blame him? He was up walking around a little bit today with his buddy Addison. They like to sit at the nurse's desk and pretend that they are in charge, and spill on their chairs. Today it was only some water and a muffin. They let them get away with just about anything up here. The doctors and nurses are great. We feel that we couldn't be in a better place. Thanks again to everyone for writing in. It really helps to know how many people are there for us. Even a simple "Hello" helps cheer us up.
Tueday, February 11, 2003 4:06 PM CST
Well, day 2 of antibodies and the doctors are still amazed at how good Lucas is doing. They are hoping to let him out of the hospital on Friday. Some tests are going to need to be run before they determine whether or not he will need surgery. For those of you who were not aware, Lucas has some scar tissue in his bowels that is causing him some pain. In order to find out where the blockage is or how bad it is, he will need to drink a contrast before having a CT scan. As we all know, Lucas has not drank much of anything besides water for a very long time. We have a speech therapist that comes in during the week in hopes to get him to eat again. Lucas has a one track mind, and if he is afraid to eat- there is no way that anyone can tell him otherwise. Even his favorite nurse- Mandy. The main concern right now is to get rid of the cancer. If his pain gets worse, there is no choice but surgery. They are also concerned that he has the same problem with scar tissue in his stomach. (Hopefully that will heal on its own without surgery.) Everything just seems to be a speculation right now. Nothing is ever for sure. I guess we just have to take it one day at a time. Thank you to everyone for all of your prayers and concerns. Kristin
Monday, February 10, 2003 9:28 PM CST
Lucas started his first injection of antibodies today. He did very well. He started to run a low grade fever, but it went back down as soon as the tylenol kicked in. The doctors want to decrease his continuous dose of pain medication. He slept a lot today. His pain was minimal, but we don't want him to sleep all day either. He is continuing to stay strong through all of this. Dave and I are dealing with things as best we can. These have been some rough times. Josh has been doing very well in school, as usual. We would never have made it this far without all of your support. Continue to keep us in your prayers.
Friday, January 31, 2003 at 08:07 PM (CST)
Our story started back in Feb.2002. We had taken Lucas to our local hospital and clinics 3 times over a 6 week period. Lucas was having flu-like symptoms. His abdominal pain was so intense that he would fall to the floor. X-rays would show a dialated stomache, but the thought was that he had taken in air while crying during the procedure. He was also treated for ear infection. We were running out of answers. The pain would let up for a couple of days, and just when we thought that things were getting better, it would return. An ultrasound finally revealed the heartbreaking news. A large 6 inch abdominal mass was found. Our primary doctor told us with tears in her eyes. Nurses were outside the door crying. Our whole world seemed to fall apart right before our eyes. How could this happen to our baby? What could we have done to prevent it? All sorts of questions were running through our minds. We were told to take him right up to Fairview University Medical Center in Minneapolis. First, we had to keep our promise to Lucas. He had always disliked going to the doctor. So I told him that when we were done, I would take him to K-Mart to pick out a toy. Not knowing that we would have to pack our bags, and spend a long time in the hospital, Lucas reminded us of our promise. Looking into his eyes, and knowing the seriousness of the situation, we could not deny this one request. So with our eyes full of tears, we carried him into the store and let him pick out his toy. He had been in so much pain that it hurt to walk. On March 18, a biopsy was done to confirm the diagnosis of Stage 3 Neuroblastoma. He has since gone through 6 rounds of chemotherapy, surgery to remove some of the tumor, a stem cell transplant with high dose chemo, and 12 rounds of radiation. Another biopsy was done on January 23 to find out if he was eligible for another study involving antibodies. There is still live tumor left, so starting on February 10, he will start antibody injections (ANBL0032). We are currently staying at the Ronald McDonald House with Josh (Lucas' 9 year old brother) so he can go to school there and still be here for his brother.
Friday, January 31, 2003 at 08:07 PM (CST)
Our story started back in Feb.2002. We had taken Lucas to our local hospital and clinics 3 times over a 6 week period. Lucas was having flu-like symptoms. His abdominal pain was so intense that he would fall to the floor. X-rays would show a dialated stomache, but the thought was that he had taken in air while crying during the procedure. He was also treated for ear infection. We were running out of answers. The pain would let up for a couple of days, and just when we thought that things were getting better, it would return. An ultrasound finally revealed the heartbreaking news. A large 6 inch abdominal mass was found. Our primary doctor told us with tears in her eyes. Nurses were outside the door crying. Our whole world seemed to fall apart right before our eyes. How could this happen to our baby? What could we have done to prevent it? All sorts of questions were running through our minds. We were told to take him right up to Fairview University Medical Center in Minneapolis. First, we had to keep our promise to Lucas. He had always disliked going to the doctor. So I told him that when we were done, I would take him to K-Mart to pick out a toy. Not knowing that we would have to pack our bags, and spend a long time in the hospital, Lucas reminded us of our promise. Looking into his eyes, and knowing the seriousness of the situation, we could not deny this one request. So with our eyes full of tears, we carried him into the store and let him pick out his toy. He had been in so much pain that it hurt to walk. On March 18, a biopsy was done to confirm the diagnosis of Stage 3 Neuroblastoma. He has since gone through 6 rounds of chemotherapy, surgery to remove some of the tumor, a stem cell transplant with high dose chemo, and 12 rounds of radiation. Another biopsy was done on January 23 to find out if he was eligible for another study involving antibodies. There is still live tumor left, so starting on February 10, he will start antibody injections (ANBL0032). We are currently staying at the Ronald McDonald House with Josh (Lucas' 9 year old brother) so he can go to school there and still be here for his brother.
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