Sunday, July 9, 2006 2:14 PM CDT

These are the links for the story on Benny's celebration of life. It was beautiful.


http://www.azstarnet.com/allheadlines/137146.php

http://community.azstarnet.com/slideshows/flash/index.php?id=587

Tuesday, July 4, 2006 12:29 AM CDT

As stated above Benny's celebration of life will be at the Z Mansion in downtown Tucson at 5:00 pm. All are welcome. I am told there will be plenty of seating.

Thank you to everyone who has sent kind words via e-mail, snail mail, guestbook, or just word of mouth. We can feel the love and it is greatly appreciated.

In addition to holding an Alex's Lemonade Stand every year on Benny's birthday to honor him, we are going to start a project called Benny's Piggy Banks. We will be opening an account and also placing piggy banks in any stores that will let us, to raise money to buy toys for the pediatric cancer clinic toy box at UMC. The toy box over flows with toys during Christmas, but has very slim pickings any other time of the year. These kids deserve a toy after having to go to clinic for treatment, pokes, blood, or whatever else. These kids and there families spend endless hours there. The very least we could do for them is give them a choice of cool toys.


Sunday July 2, 2006 2:16 AM

The Arizona Daily Star's front page story today is about Benny and his last few weeks of life. The first link below is the story. The second link is a slide show. Thank you Greg for being such an awesome human being and one hell of a photographer! Thank you Carla for writing such a thoughtful and sensitive piece. Finally thank you to the Arizona Daily Star for having the courage to print such a gut wrenching, thought provoking, emotionally devastating story. It is nothing but the truth, but it is a truth that too few people know exists. Hopefully this story will move people who wouldn't otherwise donate to dig deep into their pockets and hopefully help save some lives. As I have stated before, it may be too late to save Benny, but it is never too late to save others.

http://www.azstarnet.com/dailystar/metro/136166

http://community.azstarnet.com/slideshows/flash/index.php?id=580


Benny,

Mama misses and loves you so very much. Thank you my brave boy for changing so many lives for the better. It was an honor and a privilege to be your mom, and I will forever cherish that I was given such a gift. Sending tons of love, kisses and hugs to you up in heaven.

Love,
Mama

Sunday July 2, 2006 2:16 AM

The Arizona Daily Star's front page story today is about Benny and his last few weeks of life. The first link below is the story. The second link is a slide show. Thank you Greg for being such an awesome human being and one hell of a photographer! Thank you Carla for writing such a thoughtful and sensitive piece. Finally thank you to the Arizona Daily Star for having the courage to print such a gut wrenching, thought provoking, emotionally devastating story. It is nothing but the truth, but it is a truth that too few people know exists. Hopefully this story will move people who wouldn't otherwise donate to dig deep into their pockets and hopefully help save some lives. As I have stated before, it may be too late to save Benny, but it is never too late to save others.

http://www.azstarnet.com/dailystar/metro/136166

http://community.azstarnet.com/slideshows/flash/index.php?id=580


Benny,

Mama misses and loves you so very much. Thank you my brave boy for changing so many lives for the better. It was an honor and a privilege to be your mom, and I will forever cherish that I was given such a gift. Sending tons of love, kisses and hugs to you up in heaven.

Love,
Mama

Tuesday, June 27, 2006 9:46 AM CDT


This morning at 5:50 Benny finally allowed himself to give up the fight and take his much needed trip to heaven. He was laying in between Derek and I with me rubbing his head when he took his last breath. He was such a wonderful son who we will miss more than words can express. Thank you all for your words of comfort and encouragement. This journal has been such an outlet for me and I am sure will continue to be in the many painful days to come. I will update when I can on memorial arrangements. Just know that Benny went peacefully and surrounded by love. He gave us more gifts than we could ever thank him for and we love him so very much.


The picture above was taken a few hours after Benny died. It is of the sun directly over our house. It has a rainbow halo around it. I asked Benny to send a sign, if he could, and we believe that this was Benny saying he made it to heaven ok and was already watching over us.

We don't know the time yet, but Benny's Celebration of Life Ceremony will be on Saturday July 8th at the Z Mansion in downtown Tucson- Thanks to Tom Hill

Visit this website http://www.wipeoutkidscancer.com/

Thanks Tim!

Monday, June 26, 2006 5:15 PM CDT

Benny is still holding on tight. Last night we thought he was giving up his fight, but he proved us wrong again. Last night he coughed two coughs and then stopped breathing for about thirty seconds and then took to short breaths and wouldn't breath for about fifteen seconds. He continued that well into the morning and then all of a sudden he went back to normal breathing. Today he has been going back and forth between the weird breathing and normal. This is nothing like I expected to be. We had no idea how much fight he has in him. He looks terrible. He is comfortable, but it is torturous for us to see him this way. I have posted pictures in the photo album, but be warned they are painful to look at. He doesn't look like himself. He is comfortable and rarely has pain, but when he does we give him his medicine rectally. It seems to work faster than orally plus we couldn't give him anything orally these days. The last time we tried he threw it all up. He hasn't eaten in over a week, but is still drinking a tiny bit. That's all I've got for now.

Wednesday, June 21 10:27 PM

Benny is still with us. How he is hanging on is beyond me. He is visibly exhausted and covered with cancer. Each day I think he can't look any worse, loose anymore weight or get any paler, but he always seems to prove me wrong. He brings new meaning to the words strong and stubborn. Since we had the big talk about heaven he has been holding on even stronger. It is like he is afraid to relax because he doesn't want to leave. I have told him over and over again that it will be ok, but he has made up his mind and I can't change it. I wish he would/could tell me what would make him ok with letting go so I could do it. He doesn't want to talk at all anymore. He won't let me talk to him or touch him except to pat his belly. I will take what I can get, but oh how badly I want to hold him close and kiss and rub his head. I sneak in kisses here and there, but it makes him mad so I don't do it nearly as much as I want. He spends most of his time somewhere in between awake and asleep, because he is still aware of everything that is going on around him but he looks like he is sleeping, until you touch him or try and talk to him and then he moans/yells at you to leave him alone.

Saturday, June 17, 2006 9:16 PM CDT

Where to begin? Thursday night. Benny's breathing became shallow and irregular, his oxygen sats were between 50 and 70 never staying on any one number long enough. 90 to 100 is what an average persons sats would be, closer to 100. He was very peaceful and appeared to be free of pain. I called Dr. Bagatell and hospice and they both came over and we gathered around Benny and talked to him and waited. Come 7 am he was fine. All day yesterday he mostly slept, around 9 he woke up perky and ready to visit. He was up until about 6 am and still didn't want to go to bed until I told him he could eat in bed in between Mom and Dad and watch cartoons. He had already eaten two bowls of ice cream and some raviolis at about 5 am and then in bed he ate cereal. I am not sure where he put it all, but he enjoyed it. After going to bed at 6 am he was ready for the new day at 10 am after just a few hours sleep. He was pretty crabby so there wasn't much talking. Kristy talked him into taking a rest on the couch. I was sitting next to him and his breathing started to do the same thing again, so I just sat, watched and waited. Benny woke up and his breathing stayed just as bad so I called Derek who was at work trying to make up for the days he missed this week. No sooner did I hang up the phone than Benny's breathing normalized. Benny started asking for baby Wee. I got Ami out of his bed and let Benny feed and burp him. Then Benny was cuddling Ami and that is when Jeremia chose to confirm something that we had finally, no sugar coating, explained to him on Saturday, and said "Is Benny still going to die"? To which Benny looked stricken and looked at me and asked "What did Jeremia say"? It's not that we hadn't been talking to the boys about death, but we hadn't told them in no uncertain terms that Benny is going to die and there is nothing we can do about it, so when I confirmed for Benny what Jeremia had asked my poor baby screamed "But I don't want to die" I explained to him that none of us want him to die, but sometimes no matter how bad we want to fix something we cannot. I told him he would go to heaven and he said he didn't want to go because I wouldn't be there. I said I would come as soon as I could and he could look down and see us whenever he wanted and it would be his job to be our guardian angel and take care of us from heaven since he is always so concerned about us all and taking care of us here. He asked lots of questions and I answered every one of them the best I could. He told me he was glad he got to turn 5, but that it was too bad he wouldn't turn 6. He asked me if everyone in heaven would think he was cute and I told him they'd be crazy not to. I told him there was nothing to be afraid of that there were plenty of kids just like him to play with and all of his favorite things would be there. He told me he would do his best not to be afraid and then asked if we could stop talking about it. He let me hold and cuddle him for about an hour which I cherished every second of. Derek came home and things were normal for a bit and then my Mom asked him if it would be OK if she went home for a few days and that is when my five year old who doesn't know the days of the week said "I could die on Sunday. You have to think about that you know."



There are new pictures in the photo album.

Thursday, June 15, 2006 10:46 PM

The baby was born June 14th at 12:26 am. His name is Ami Wee Petz. Ami rhymes with Mommy for those of you who don't know how to say it. It means leader of the people in Hebrew. Wee is of course the name that Benny picked out for him. We were originally going to call him Ami Zander Wee Petz, but it was too much so we eliminated Zander. Anyway my labor was induced Tuesday June 13th at around 4 pm because I had preeclampsia and my doctor was concerned. Even though just Friday we were told his lungs weren't ready, he was born 3 weeks before his due date and weighs 8lb 8oz and is just barely under 21 inches long. He is perfect and healthy adorable and his lungs are working great. Derek brought all of our boys to the hospital to meet Ami, including Benny yesterday. We hadn't seen Benny truly happy in awhile, but the baby brought him some much needed happiness and we got the pleasure of watching Benny hold and smile at Ami while he rubbed his arm and asked questions. Benny kept saying that he could never get tired of holding him because his skin was so soft. It was definitely a soul warming time for us all. Good medicine.

Benny is doing very poorly. To list everything that is falling apart on him would be too emotionally exhausting right now, but later perhaps, I will elaborate. We are keeping him sedated for the most part. Benny, in my opinion, is ready to let go now. I was in the hospital all day Tuesday, Wednesday, and this morning and in just that short 2 1/2 day span he has gotten so much worse and is just waiting to die. I have a lot more to say about this, but I am exhausted and simply must go to sleep as I have had next to no sleep in the past several days.

I will try to update tomorrow with more.

Friday, June 9, 2006 12:54 AM CDT

I am having an amniocentesis in five hours to determine whether the babies lungs are mature enough for them to induce me. I am 36 weeks along. If the babies lungs are mature he will be welcomed into the world tomorrow if they are not then I will have to wait a week and then get another amnio. I really hope they are ready because one needle through the belly is enough for me, and Benny isn't doing to well. We are keeping his pain managed still for the most part, but he is starting to complain about not being able to move his legs. I believe the giant tumor on his spine is starting to affect his mobility and it is only going to get worse. He also seems to be having some trouble mentally. He gets confused and looks for things that he is holding, some of that is related to the meds, but I also think some of it might have to do with his brain tumor/s. I think the general consensus is that he is ready to go, but is waiting to meet the baby before he lets go. It is entirely too strange to explain what it feels like at this point to be getting ready to usher one child into the world and helping another leave. There really aren't words.

10:47 pm same day
No baby today. His lungs are not ready yet. We will retest next week.

Tuesday, June 6, 2006 12:18 AM CDT

Benny's pain finally seems to be under control. We ended up giving him several enemas, started him on acid reflux meds, and upped his methadone and valium. The combo of all those helped. He slept the majority of the day, but didn't cry or scream at all today. He did furrow his eyebrows or rub his tummy when the meds were starting to wear off so when he would start to do that I would just give him more meds and so far it has worked. He actually walked a few steps today to the bathroom which is more than he has been able to do in the longest time. I am starting to see tumors on him. He has one on his skull, one on his collar bone, and a golf ball size one in his left armpit. This cancer always seems to be right on our tail once we get one problem solved it is already well into causing other problems. All that matters now though is Benny's comfort, and today was a good day we made some adjustments and they worked. I hope I hurry up and have this baby so I can really hold Benny close again. It is impossible to hold him properly with this enormous orb attached to me. Thank you everyone for surrounding us with good thoughts.

Saturday, June 3, 2006 12:33 AM CDT

I am mad as hell and I don't know where to put this rage. My son spends 24 hours a day in pain and nothing we have tried has worked. I have been telling myself that we could get through this as long as we can keep Benny pain free. Is that even possible. Does that happen for anyone. Because here we are we have nothing to lose he is going to die no matter what we do and we cannot manage to keep him out of pain with all of the medicines there are today. Granted Benny is allergic to almost all pain medicines we have tried, but there has to be something it is such an injustice that my baby has to die but it is an atrocity that he should suffer so. His belly is the cause of the most unbearable pain, and we haven't the foggiest idea why it hurts. The ultra sound was clear everyone has palpated his belly and felt nothing. The only thing that brings even the slightest relief is if we rub it so that rules out a mass of any kind. He is on so many freaking medicines and with each new med someone says well maybe it's this med causing the problem, but the belly ache has been on going since before any of the med's he is currently taking and it just keeps getting worse. I am so emotionally torn and angry. I want him to hurry up and die so he won't hurt anymore, but the mere thought of his death rips holes in my soul. I feel I have been patient with the doctors waiting for them to figure something out, the only thing they have come to me with is an epidural which didn't work for him in the past so I said no hoping they would come up with something better but they haven't, so it looks like we will be doing that next and I cannot express how badly I hope that it will work. The radiation helped his legs a lot. They still hurt but not nearly as bad. I had hoped that once we got his leg pain under control that the belly pain would prove to be stress and clear up. I just want for him not to hurt anymore. It is so exhausting having a child in pain and being unable to fix it. He won't eat because his stomach won't stop hurting long enough. He has lost so much weight he is withering away. I just thought his death would be so much more peaceful than this. Everyone has more questions nobody has answers. I want to smash things to release this emotional pain and frustration. He lays in bed and begs and cries. He tells his stomach to stop killing him. He tells his stomach that it is making his life terrible. This is not right. I cannot type anymore I have to go scream.

Monday, May 29, 2006 8:51 PM CDT

The lemonade stand was a huge success. We raised over $13,000. I was amazed at the turn out. Tucson definitely stepped up to the plate. We raised $8,000 in four hours. The rest was donated through the website. Our local newspaper ran a front page story about Benny. Here are the links for the articles that ran. http://www.azstarnet.com/allheadlines/131061.php this is the story that ran front page Saturday morning.

http://www.azstarnet.com/allheadlines/131190.php and this one is the one that ran Sunday

There are many generous souls here. Thanks to everyone for their support, kind words, and gifts.

I was blown away when people were bringing Benny birthday gifts. It never occurred to me that anyone would bring Benny gifts. I met and spoke with many wonderful people. It was a terrific day. Benny slept through most of it, but was awake when the Tucson fire department made a special trip to meet such a brave young man.

Benny is still having a hard time with his stomach. We can keep his leg pain managed for the most part, but his tummy is still a mystery, and nothing seems to help it completely. It is frustrating not being able to help him not hurt. He has radiation tomorrow through Thursday and then should be done.

I do not have the words to express my deep gratitude for everyone who helped with the stand. Thanks to all of you who donated time and or money. I never dreamed it would be such a success and I cannot wait to see what we can do next year.

Thursday, May 25, 2006 2:44 PM CDT

We were at the hospital all day yesterday. Benny had an ultrasound yesterday morning to so we could find out what is going on with his belly. Everything looked normal. He has gallstones, which he's actually had since transplant, but his gallbladder is not inflamed so as near as we can tell it is anxiety that is causing the tummy pain. The valium helps. He also had an x-ray of his left leg and we talked to Dr. Stea his radiation oncologist and he agreed to radiate both femurs for five days. His first treatment is this afternoon. If this radiation works like all the other times then that should clear up his leg pain. Benny's 5th birthday is tomorrow and his lemonade stand is Saturday. I have been super busy between the stand and the kids I am exhausted. We have already raised over $1400 and haven't sold a drop of lemonade yet.

Friday, May 26, 2006 11:22 pm

Benny is just about the same. He is having super bad tummy aches and we have no idea what is causing them. We have tried everything we can think of and nothing makes them go away completely, but that isn't the real reason I am updating. I am updating to share a short story with you. This evening we had chinese food for dinner and of course that means fortune cookies. Jeremia's fortune said "you are in for many joyous days". I read it to Jeremia and he said "Ah man! I wish Benny would have gotten that, because he could use a joyous day or two!".

Such sweetness, love and heartache........sigh.

Wednesday, May 17, 2006 2:17 PM CDT

Benny has been having some good days and some bad days. Monday was a bad day for him, but yesterday and so far today have been good. On Monday his stomach and his back were hurting really bad. We are not sure if it was pain from cancer or if it was side effects from the first dose of Zometa. Zometa can cause general achiness, tummy pain, and achy bones. I hope that's all it was, but am doubtful. He got blood yesterday and has had a little more energy since. He is getting excited for his birthday party with the unicorn pinata and lemonade stand. We are working on getting everything prepared for the party/stand. I have started making matching T-shirts for us and have delegated the task of hanging flyers, and Derek is calling radio stations to see if they will come so we can get the word out as much as possible and raise a ton of money.

My ultrasound was Monday and they confirmed what we thought. The baby is HUGE. I was not supposed to be due until July 2nd and the baby is already over 6 lbs. The sonogram machine estimated that I should be due June 13th. My OB appointment is next Wednesday and I am sure we will discuss what we are going to do. They had to induce me 2 weeks early when I was pregnant with Conrad for the same reason, which worked out well because he was born in between Benny's bone marrow transplants and not during one.

We are up to $330 in on-line donations for the lemonade stand. Thanks for your generousity everyone. If you want to donate see the link towards the bottom of this page cut and paste it into your browser.

Monday, May 15, 2006 12:20 AM CDT

We had a blissfully uneventful weekend. I gave Derek and the boys a free pass for Mother's day. I know they love me and no one feels up to shopping or exerting any extra effort so I accepted hugs for Mother's day and I have no complaints. Thank you for the lovely Mother's Day gift Angel Jennifer and for the books for the boys with the cute bag. Thank you for the extremely generous offer Tim, I may just take you up on it. I will e-mail you, hopefully, tomorrow. Benny is officially on hospice, but we still go to clinic for some stuff. Since I will be at the hospital tomorrow for my ultra sound and the over due, dreaded glucose test I will swing him by clinic for a needle change. His port needle has to be changed every 7 days. The only thing he is currently on IV is the Vanco. He finished up his Zithromax (antibiotic) today so he just has to finish the Vanco and then he will just be taking the Methadone and the Cyclo (chemo)until next week when we will hopefully start vit C. The Methadone is doing a great job controlling his pain and the greatest thing about it is that it is long lasting so he doesn't need it that often. He can take it every six hours but usually doesn't need it that often. We are also doing Tylenol and IB Profen to keep the pain under control and also to help with his fevers that he is still having. They are no longer low grade. They have been averaging around 102.4. He gets up and plays in the morning for several hours with his GI Joe Ninjas and then watches TV for a spell then takes about a five or six hour nap, wakes up refreshed ready to socialize until bedtime. He is doing really well considering everything his little body is going through. He has been talking a lot in his sleep and says stuff about killing something, but the only word we can make out is kill. The other night though he woke us up yelling clear as a bell "I don't want to die" and "you can't make me die" Derek and I were startled and tried to talk to him but he was sound asleep and just rolled over and didn't make another sound. The next morning of course he didn't remember a thing about it though, but I think it is time for us to start mentioning and discussing death, dying, and heaven so he hopefully won't be afraid. He has been through so many things a child should never have to go through and we as parents have had to watch and prepare for so much that no parent should ever have to. Jeremia is having an exceptionally difficult time and has become very clingy and is feeling very insecure. I cannot fathom how scary this all must be for him. We have not told him that Benny is going to die, but he is no dummy. We are waiting for him to broach the subject with us for right now. When he is ready to talk about it he knows we are here for him, but I wish there was some way I could reassure him everything will be OK, but I can't because everything is far, far from OK.

If you are not going to be able to make it to Benny's, Alex's Lemonade stand in honor of his fifth birthday, please see the link below to donate so we can reach our goal of $1,000 towards childhood cancer research. We have raised $195 so far thanks to generous souls. It would be great if we could meet our goal or even better exceed our goal. We hope to hold a stand for years to come to celebrate/commemorate Benny's birthday.

Thanks for stopping by to check on us.

Thursday, May 11, 2006 3:56 PM CDT

Benny is doing much better. We still aren't sure what exactly caused him to get so bad, but here is what we do know- Benny has a Staph infection in his blood and a small case of pneumonia. He will be coming home on hospice. He is on two antibiotics and will continue them for probably 7 to 10 days. He started the Cyclo (chemo) Monday night and will continue that indefinitely. It is oral and a low dose. His potassium level keeps dropping so he's been having to take that twice a day orally. He will be getting his first dose of Zometa in just a few minutes. He only has to get that once a month by IV. We will have to give him calcium supplements because it can effect calcium levels. We took him off of the Oxycodone because it wasn't helping his pain and was making him loopy. He is now on Methadone and it is working great, but makes him sleepy. He is so very stubborn and fights the sleep, but when he does give in and allows himself to sleep it is very peaceful sleep which is a major improvement from where we were on Monday. The Methadone manages his pain well enough that he is again able to walk, and he is no longer paranoid that someone will touch his leg. He can move his leg much more. He is still a little guarded as it isn't completely pain free, but it is a thousand times better than it was. On the whole he is doing pretty good, all things considered.

I went to the OB yesterday and she said the baby is looking pretty big so I will be having an ultrasound on Monday to determine whether we need to up my due date or not.

Thank you to everyone who is donating in honor of Benny and to everyone who has e-mailed me offering support or just kind words and thanks you all for taking the time to check up on Benny and for thinking us.

Tuesday, May 9, 2006 2:57 AM CDT

Another late night. Benny is inpatient. Dr. Bagatell called me this evening to tell me Benny's counts were all normal except for his Sodium level was too low and if they dropped lower it could be potentially dangerous for Benny, so he was admitted just for fluids and to monitor his sodium levels every four to six hours. We got all settled in Benny had fallen asleep and I was getting ready for bed when I noticed Benny starting to act funny. He was doing strange things with his mouth and was making strange noises with each breath. I got the nurse who paged the doctors and we checked his oxygen sats were only 69 and his heart rate was 150. They put him on oxygen and gave him 2 boluses of fluid and started antibiotics. Dr. Bagatell was worried that he might be having mini seizures, but no one really knew what was causing this. I called Derek and told him he needed to find someone to watch the kids so he could come to the hospital just in case. Benny is stable right now. He is on oxygen and is being monitored closely. He wakes up confused and disoriented, but once you talk to him he is fine and even a little chatty, but when he is asleep his breathing becomes labored and eratic. He has been given enough fluid to make his face puffy and his belly distended, but has not peed an ounce.

While driving Benny here I was overcome with the overwhelming feeling that he wouldn't be coming home which was totally irrational because at the time he looked and was acting fine except for the leg pain. I am beginning to wonder though if my inkling was right? I don't know. He could wake up in the morning and be fine or we could just continue this downward spiral. As it stands right now he will be getting a chest xray tomorrow because he is starting to sound really conjested and junky when just this afternoon it was clear. I have no answers just a bunch of questions. I am too tired to proof read this so if it makes little to no sense accept my appologies and I will try and update with answers soon.

Monday, May 8, 2006 247 AM CDT

We are throwing an Alex's Lemonade Stand in honor of Benny's 5th birthday. We will be having it on May 27th 2005 from noon to 4 pm, hopefully at Reid Park in Tucson. More details will be coming very soon. We wanted to do something really big for Benny's birthday since we didn't think he'd make it to 5. We may not be able to save Benny, but I cannot think of a better way to honor him than by helping to raise money to hopefully one day save others.

Also I just created another site for Benny that is a little easier to remember. It is simply bennylove.com Don't worry our caringbridge site isn't going anywhere, they are linked together, but just bennylove is easier to remember than caringbridge.org/az/bennylove and also I am able to have more links, pictures and anything else that float my boat.

I also wanted to share that for those of you who live out of town and cannot come to the lemonade stand you will still be able to help us raise money for children's cancer research. Just go to www.firstgiving.com/bennylove to give. Every penny counts.

Benny is still hurting and we have upped his meds to 4 mls of Oxycodone every two hours and are looking for alternate meds since it won't be long until he is fully allergic or resistant to Oxycodone. We will be in clinic later today, but first I have to go to bed. I am up way too late.

Sunday, May 7, 2006 2:19 PM CDT

Benny is in pretty bad pain. His right leg is causing him the most pain, but his right arm just below his shoulder is starting to hurt as well. He can barely walk. He can only lay or stand, sitting is impossible because it hurts so bad to bend. This disease is a total monster, with how fast it attacks and destroys. He starts Cyclo (chemo) tomorrow, so hopefully that will help with the pain. He is taking 4 ml Oxycodone every 2 hours, Tylenol, and IB Profen and he is still in significant pain. He is allergic to so many pain medications that we have no idea what to try next, but Dr. Bagatell is searching. He is starting to itch when we give him the Oxycodone and that is always the first sign he is becoming allergic so now we are pre treating him with Adderax. I wish things could be easy for Benny, but unfortunately everything seems so complicated and difficult when it comes to keeping him out of pain.

Big Sigh.......

Thursday, May 4, 2006 10:05 PM CDT

Benny is doing really good. His right leg is causing him some pain, but other than that he feels really good. We will be trying a new treatment next week, provided our insurance approves it. There is an osteoporosis drug called Zometa that has been shown to attack bone cancer and since the majority of Benny's tumors are on his skeleton I think it is a smart move. The side effects are minimal. He would also be taking a low dose of chemo orally that he has had many times before just to hopefully keep his neck and cheek in check. On top of that we are hoping to start high dose vitamin C towards the end of the month. Studies show that high dose vit C attacks cancer effectively with little to no side effects. The more we successfully attack the cancer the less it will cause him pain. I am really excited that there are treatments we can do locally that appear to have promising results around the world.

My birthday was really good. The boys were so cute. Benny kept telling me he was going to get me something really special. When Derek took them shopping he asked Benny what he had in mind to get me that was so special. Benny in his infinite cuteness said a PINK shirt, so he found me a pink shirt and also bought me, his favorite computer game. I am grateful for the little laugh I have every time I think about him buying me his favorite things and I feel privileged to be worthy. Jeremia is becoming such a little man. He was so excited he could barely contain himself. I had to open his present first, because he said it was the best present ever. He bought me a gold heart mom necklace with little black hills gold flowers on it. It is very pretty and he was ecstatic that I liked my "jewelry". He kept saying "do you love your real jewelry mama?" Derek baked me a cake and the boys helped put 30 candles on it and after I made my wish and blew them all out, Benny had to lick the icing off of all of the pink candles. Kristy came over for dinner and spoiled me rotten with tons of goodies. It was a good day.

Monday, May 1, 2006 2:47 PM CDT

We are home. We got home Friday afternoon. We had a ton of fun. Tuesday was just a travel day. We got 4 star treatment thanks to Mike and Mary Dawson, who went above and beyond anything we had hoped for and spoiled us all rotten. Benny was serenaded on the airplane by one of the flight attendants who sang "The Wind Beneath My Wings" and made me Derek and Melissa all cry. We had extra help with the kids on the plane because one of our favorite social workers was flying to San Diego for a conference and just happened to be on the same flight. Thanks Melissa. When we landed in San Diego Benny got really upset. He said "that's it? That was boring." He thought we landed back in Tucson and that was our vacation. It took me about an hour to get him to understand that, that was just the beginning he had all sorts of fun stuff ahead of him.

We went to Legoland on Wednesday. The weather was beautiful. Legoland was so much fun. The kids had a blast and went on every ride. Benny kept yelling at me that he didn't want to pose for another picture, he want to go on another ride, so I didn't get as many pictures as I would have liked, but I love the ones I got.

Thursday was Sea World, but the weather did not cooperate as much as we hoped. It was rainy or misty for 90f the day. We were all wet and cold and Benny asked to leave halfway through the day. We let the boys pick out anything and everything they wanted from the gift shops and headed back to the hotel.

Friday before our flight we took the boys to see the Star of India and the Russian sub, and then we came home.

I was happy to get home. I enjoyed our vacation, but it was highly emotional for me. I was weepy for a good portion of the trip, but managed to keep the kids from noticing, by Friday I was tired of trying to keep my emotions hidden. It was wonderful to see the boys have so much fun, but also gut wrenching because I know that this was the last family vacation with Benny. Benny was having pain here and there, especially on Thursday. I think because of the cold wet weather and having had a long active day the day before. It hurts so bad to see my baby in pain. I hate not being able to make it go away. I am terrified about what the future will be like. He is so tough and so stubborn. He rarely complains and doesn't whine. I just wish I could wave a magic wand.

Today is my 30th birthday, which means just 25 days until Benny's 5th. There have been many, many times that I have questioned whether he would make it to 5 and amazingly it seems he will. He wants a pink and purple unicorn pinata for his birthday. He has always been so easy to please. I am so very lucky to have been chosen to be his Mom.

I am trying really hard to fight the desire to be antisocial. I just don't feel like talking a whole lot, even though it probably helps. I want to be in denial, but know that that won't change anything. I want to be angry, but am too exhausted. I just want the illusion of control back.

We want to thank Mike and Mary Dawson from the bottom of our hearts for everything that they have done for us. We are eternally grateful for everything and for them allowing us into their lives. They are two of the most generous, loving, giving people we have ever met and I hope to have them in our lives for a long time to come.

Monday, April 24, 2006 9:43 PM CDT

We have been cleared for take off finally. We are leaving for San Diego tomorrow morning. Benny is feeling good and has started to gain back some of the weight he lost. He is still thinner than thin, but he's going in the right direction. I will update, hopefully with lots of adorable pictures, when we get back.

Amy

Tuesday, April 18, 2006 1:43 AM CDT

Benny is finally starting to perk up. This morning he played GI Joe's with Jeremia for about an hour and was actually talking, he even yelled at Conrad for being a pest. I think Benny spoke more today then he has in the past three weeks combined. The TPN is definitely helping because he still isn't eating. He does try to eat, but everything tastes gross to him. His mouth is trying to heal. The whole left side of his tongue, roof of his mouth and inner cheek is a giant scab. He is drinking Cherry Pepsi like it's water though. Why the carbonation doesn't hurt him I can't say. I am just happy he is consuming calories one way or another. We are all thinking that if he continues to improve this way we may actually make it on vacation next week. Time will tell.

Friday, April 14, 2006 1:09 PM CDT

Benny's mouth has improved somewhat, but he is still unable/unwilling to eat. His tongue is still too sore to move freely so he is limited in what he is able to eat. We have tried EVERYTHING and he says nothing tastes right. He started TPN on Wednesday and that has helped with his energy level. He actually came outside and sat on the stoop with his cap guns yesterday while I watered the trees and flowers. That was HUGE. So much activity wiped him out and he went to bed and is still there as I type. He is just very weak, but not in pain, thankfully. Our current hurdle is finding something that he can eat that doesn't taste funny.

Saturday, April 8, 2006 5:08 PM CDT

New Pictures in photo album, finally.

Benny is doing slightly better. He has gotten over the stomach bug, thankfully, but he now has mucusitous in his mouth from the radiation to his face. He is barely able to open his mouth and cannot eat because it hurts. We are having him gargle with salt water and had a script called in for miracle mouthwash today. If that doesn't help then he will have to start TPN. He is nothing but bones, he has lost so much weight. It's not like he had a bunch of weight to spare in the first place. We will not be going to San Diego this week, but we are hoping to make it next week. The radiation machine broke down so he will not be getting radiation again until Tuesday and then again on Wednesday and then he should be done. That will give him about five days to recover from all of the side effects from getting radiation. We are still not sure if the low blood counts are from the little bit of chemo he was on or if it is from his bone marrow being overwhelmed with cancer. He still lays around and sleeps or stares at the TV all day. He is weak and uncomfortable. He barely talks and just looks so very sad and miserable. We are doing everything we can think of to make him comfortable. He is still on fluids, which helps since he barely drinks and doesn't eat. He is just tired of feeling like crap, and we are tired of feeling helpless.

Wednesday, April 5, 2006 9:24 PM CDT

Unfortunately this latest lapse in updating was not a case of no news is good news. On Saturday we drove to Phoenix for a family reunion and on the way home I got really sick with what I thought was car sickness. It ended up being the flu and put me in the hospital for about 5 hours on Sunday where they treated me for dehydration and then I went home and slept for 48 hours straight. Benny, Jeremia and Conrad all got different versions of the same thing on Sunday. They all just didn't feel too hot, but Benny having a weaker immune system that is already under stress got knocked out and slept right along with me for the 48 hours and then some. All he would do was lay in bed and stare into space or stare blankly at the TV when he was awake. By yesterday evening I had decided that I would take him to clinic today for fluids, but by 8 o'clock last night I had decided to take him into the hospital to be admitted overnight for fluids. He had started throwing up every 30 minutes and was starting to shrivel up. They drew blood for counts when we got to the hospital and we discovered his counts were horribly, dangerously low. His platelet count was almost 0, how he wasn't throwing up or pooping blood is a mystery to me. I was thinking once they gave him the blood, platelets and fluid he needed he would perk right up like he always does, but that is not the case. He still mostly sleeps and when he is awake he doesn't want to do anything but lay and stare. He barely speaks and when he does it usually just yes or no in answer to a question. Dr. Bagatell and I discussed filling out the DNR paperwork, so that Benny will not end up on a ventilator, nor will he be given CPR should he stop breathing. We are not sure if Benny will be well enough to go on his trip to Legoland/Sea World next week. If he is feeling the same then as he is today then we will not be going anywhere. There is concern that the reason his blood counts were so low is because the cancer has consumed his bone marrow so much that it can no longer thrive and replenish Benny's blood the way it should. There is also concern that because of his low counts how much his little body is fighting right now that he may not be able to bounce back from this stomach virus thing. Benny's little body is plum tuckered out and it is emotionally devastating to see. We were given the option to stay at the hospital or come home. We opted to come home and keep Benny on IV fluids. He has lost a lot of weight in the past few days and he didn't have a whole lot to spare. Dr. Bagatell suggested that maybe it be better if Derek didn't go to work until we know if Benny is going to make it over this hurdle or not. Things change so quickly I do not want to be home alone with Benny and have him stop breathing and then have to call Derek. We are currently using home health through the hospital, but will be switching to hospice next week. Benny is still getting radiation daily to his face and neck because it has stopped the pain and made the tumors shrink. The most important thing for me right now is that Benny is not in pain except for the stomach cramps from the diahrea. It is kind of like having him go through BMT again...it is that bad. We are using Fenergen and Zofran and heat packs for his tummy but there really isn't anything else to do, but wait and hope it runs it's course and hope that Benny's marrow bounces back. I am exhausted emotionally, and physically and am heading to bed. I am hoping that I have relayed all pertinent information and somehow managed to make my scrambled thoughts come through clear.

Tuesday, March 28, 2006 8:45 PM CST

Today was Benny's third day of radiation to his left arm. They were able to make the mask of Benny's face yesterday without anesthesia, or sedation of any kind. He didn't like it, but he did fantastically. After Dr. Bagatell got back into town and read the report from Benny's MIBG scan she called us and told us it would be in our best interest to get Benny on vacation sooner, rather than later. We were planning on going to California in the end of April, but she suggested we go as soon as radiation finishes which should be mid April, and she was going to talk to the radiation oncologist to see if he could speed it up so Benny finishes sooner. The plan right now is to radiate his left arm, left cheek, and right neck. They haven't started radiating his neck or his face yet. They are still plotting it out. He has tumor on both of his legs upper and lower, on one of his ankles, on both of his hips and both of his arms. There is new tumor on the right side of his neck, and the swelling in his face is from a tumor on one of his salivary glands. So far the cancer hasn't responded to any of the treatments we have tried. We are radiating the spots that hurt and hoping that none of the other spots will start hurting until after he has been able to enjoy his last vacation. I have been given the phone numbers and names for the hospice our insurance will cover, but have not been able to bring myself to meet with them yet. I know it will be a good thing for us to have them involved, but at the same time it sort of feels like admitting defeat and giving the cancer permission to take my baby. None of what is happening is a surprise, but because it is impossible to be prepared for all that is happening and all that will happen, it is bewildering. Benny's days involve a lot of resting on my bed watching TV with intermittent short moments of play. He gets tired out very easily and is perfectly content to just sit and watch activity rather than join in. This weekend we planted some flowers on Saturday and Benny was exhausted by the third one so he went in the house to rest. Sunday we took the boys to Old Tucson and bought them cap guns and they got to meet "real" cowboys. Benny sat in the stroller most of the time, but had a ton of fun and told me today that he wants to go back.

Benny has brought so much love, laughter, and joy to so many, it is impossible to imagine this family, this world without him in it. The thought of it is just too devastating for words.

Saturday, March 25, 2006 11:40 AM CST

We are home now. Later in the day yesterday, the steroids they were giving Benny started to kick in and we got the pleasure of spending the rest of the day with exorcist Benny. Oh my...he was MEAN! We just had to sit back and laugh, even though it really wasn't funny. Sometimes laughter is all you have to keep you from melting down. They radiated his arm and tried to make a mask so they could radiate his face but he was in no mood. He wanted nothing to do with the scary process they use to make a mask so next week they will do it under anesthesia. I do not have full scan results and what I do have is two different takes on the results from two different doctors. Once I talk to Dr. Bagatell I will have a better idea.

Friday, March 24, 2006 1:59 PM CST

Benny woke up with extreme pain in his neck yesterday morning. It is on his left side exactly where his tumor was radiated a few months ago. He was already scheduled for his MIBG scan so we had that done under anesthesia. He woke up in pain so we gave him Oxycodone which he promptly threw up. We waited a bit and gave him more, but two doses later he was still uncomfortable. I ended up taking him home and giving him Oxycodone every two hours, IB Profen and then eventually Zofran because he kept throwing up. Oxycodone is hard on your stomach and when you haven't had anything to eat all day and refuse to eat even when you are allowed to finally that makes it even worse. Last night at about 6 Benny started to lose his voice. That concerned me because I was worried about the tumor in his neck causing havoc so close to his air way. Then naturally about an hour later he started having trouble breathing. I called the doctor for the third time that night and he said because we live over half an hour from the hospital we should call 911. By the time we got Benny into the ambulance he was breathing fine. We were directly admitted to the hospital and he has been breathing just fine thankfully. He wasn't supposed to start radiation until next week but they are starting emergency radiation today. We are meeting with hospice next week to discuss our options and get information.

Benny is still talking with a strained voice and while we are managing his pain with Oxycodone and now Demerol he just isn't feeling too hot. He is sad and pitiful looking and it just breaks my heart.

Tuesday, March 21, 2006 1:22 PM CST

Benny is feeling good. He has a radiology appointment today. The last appointment was just a quick consultation this appointment is the actual simulation and then he should start radiation very soon. He started the Etoposide chemo last night. He takes two pills, two days in a row and then one day off and so on. We will be at the hospital for radioactive isotope injection tomorrow and then the big MIBG scan on Thursday. That is the scan that lights up all of the Neuroblastoma in his body. Fingers crossed that no new spots appear and that old spots aren't getting bigger. I have an OB appointment Thursday before Benny's scan. I am 25 weeks pregnant as big as a house. Benny doesn't miss an opportunity to rub my belly. He is so much fun to be around.

TTFN

Saturday, March 18, 2006 6:05 PM CST

Home! We were released last night. Oddly enough Benny's leg and arm haven't been hurting him at all. We tried the Oxycodone yesterday afternoon even though he wasn't having pain. We just needed to make sure he wasn't going to have a reaction and he didn't. His cheek "burns" on the left side periodically throughout the day. The docs think it is nerve pain. Pain medicine doesn't help it. We try alternating cool and hot packs and putting lidocain cream on his cheek, but nothing really seems to help. It usually stops hurting within twenty minutes or so, but we don't know what if anything triggers it and or makes it go away. Benny starts radiation on Tuesday and oral chemo sometime soon. Jeremia starts soccer on Wednesday and he is so excited. I asked Benny if he wanted to play too, but he said he just wants to watch Jeremia.

Thursday, March 16, 2006 9:54 PM CST

Benny has been admitted to the hospital. He is now allergic to Fentanyl. He started itching all over from it today and now we are going to try Oxycodone for pain, but since Benny is so sensitive to meds we feel more comfortable trying new ones where he can be treated for any reaction quickly. We live about 40 minutes from the hospital and that is too far when your itching and having trouble breathing. Benny had a bone scan yesterday and although I can feel a lump in his jaw and it is swollen, nothing lit up in that area on the scan. He does however have a new spot on his left hip. He does his radiation simulation tomorrow for his arm and leg, but they aren't going to do his jaw since we aren't sure what is going on there. He has an MIBG scan next Thursday that will help us determine whether it is a soft tissue tumor in his cheek instead of a tumor on the bone like we thought. Right now he is only on Tylenol and IB Profen and feels good. Every once in a while his left cheek burns, but yet again we aren't sure why, ice seems to help. Also Benny will start oral etoposide (chemo) next week for the cancer in his body that isn't being radiated. As of right now we are just radiating the spots that are causing pain in hopes of getting Benny to Disneyland and or Sea World next month. That's all for now, you know everything I do.

Tuesday, March 14, 2006 0:07 AM CST

I haven't felt like doing an update, but I know it is not fair not to share, and I can't keep you all hanging just because I am not in the mood to think. We have new decisions to make. Benny had another emergency MRI on his left arm today so they could compare it with the one he had a few weeks ago. I do not have results yet, but Benny is officially off of the trial. He has a tumor in his left jaw that I can feel. We will most likely radiate the tumor on his jaw, but I don't know about the rest and cannot think about it right now. I will think about it when we have the results from the MRI. I will update later when, hopefully, I feel more like communicating. Right now I just want to not think about what is to come. The important thing is that Benny's pain is being managed and he is happy, and that is what I am focusing on right now.

Wednesday, March 8, 2006 12:32 PM CST

Finally I am updating. Benny had a round of chemo yesterday and will have another on Friday. We will repeat the same schedule next week and then the week of the 20th is jam packed with tests and scans. On the subject of how Benny is feeling...It depends on the moment,but he is having a lot of pain. On the way to clinic yesterday he announced that his left leg was hurting so Conrad walked and Benny rode in the stroller. In clinic we put a heat pack on his leg and ordered a Lidocain patch for it. Then his left jaw started hurting and we put a heat pack on that. He was pretty irritable and just wanted to rest. They ordered him a Fentanyl lollypop but he didn't want it. He asked for it on the way home though. When we got home he was feeling better and wanted to play, but by dinner time which was about an hour after we got home his jaw was hurting again and he didn't really eat and we were having one of his favorites, macaroni shells. We gave him Fentanyl, Tylenol and IB Profen over the next few hours and he was still in pain. He wanted to go to bed, but said his bed hurt him so we put him on top of the quilts for extra padding and that helped because he was able to fall asleep and stay asleep. Today his leg was hurting him again so I put a patch on it and gave him Fentanyl, an hour later he was still crying out in pain so I called Dr. Bagatell and she said to give him Tylenol and IB Profen to maybe take the edge off and then re-evaluate in 30 minutes. After I gave him the medicines Benny's favorite volunteer, Amber, arrived to play board games and hang out with him. Amber is an excellent distraction and Benny's pain seems to be under control. How long it will stay that way, I cannot say, but hopefully for a long time. His pain is starting to affect his attitude. He is normally very subdued and quiet when he hurts. He wants you close to him, but doesn't want to talk just wants the comfort of me holding his hand or rubbing his head. More often than not now though he is getting angry and inconsolable. Relaxing helps control the pain, but he gets to a certain point and it is almost impossible to calm him down. It is both frustrating and heartbreaking.

I am starting to feel a little overwhelmed. I can feel the pressure within starting to build and I know I have to find some release before I explode. I need a vacation.

Wednesday, March 1, 2006 9:22 PM CST

Benny is doing well. He looks great. His pain is almost gone. He only asked for medicine once today. He had what he called cheek pain the other night that scared me, but upon further investigation and discussion it turns out it is tooth pain. We will have to get that fixed. He has been having fevers, mostly at night, but his counts are good so I have to assume that it is the Neuroblastoma causing the fevers. The doctors have neither confirmed nor denied my suspicions. I think it is part educated guess and part mother's intuition on my part and so far no one has argued with me about it. The important thing is that Benny's pain is under control. Since there is no clear sign that the cancer has grown we are going to do one more round of the trial chemo and then re scan. We will be able to know with hopefully more certainty whether it is working by then or not. Hurry up and wait, always.

Saturday, February 25, 2006 10:21 PM CST

Benny is home. He is feeling good. He is using his arm a little. He was sent home with Lidocain patches and Fentanyl Lollypops. We can also give him IB Profen as needed. So far so good we will see how tonight goes. Fingers crossed for no pain.

Friday, February 24, 2006 10:01 PM CST

Benny is still in the hospital. His pain is under control for the most part. He gets a Lidocain patch for 12 hours a day that they put directly on his inner elbow. He gets Fentanyl as needed so far he needs it every 2 hours or so. They are hoping to send him home tomorrow with Fentanyl lollypops because they for some reason last longer than any other oral Fentanyl and for whatever reason they don't want to send him home on IV meds. Benny had a bone scan, MRI, and an ultrasound of his arm today. You would think that with all of the tests he has gone through in the past two days we would have concrete evidence of why his arm is hurting. He has cancer on his upper left arm bone which he has had since he relapsed, but as far as the scans show the two tumors he has on that arm do not appear to be bigger but they (the doctors) cannot say for sure. It is reasonable to assume however given that there is nothing else going on in his arm that it is the cancer causing the pain. I basically have just as many questions now as I did earlier this week. Benny is scheduled to have this coming week off from chemo. Monday Dr. Bagatell and I will discuss what our next step is.

Benny is in good spirits. He was on local TV today, but I missed it because he was still in a scan when it aired. He held still for 35 minutes today without sedation of any kind for his bone scan. I do not know of any other four year old who could do that. He is AMAZING! He was not allowed to eat today until after 6pm because of the MRI (he was sedated for that one, I was not going to push my luck with him) He was really quite irritated at the whole thing but handled it all very well considering.

That is it for me I am off to putter around the house since Daddy is staying with Benny tonight.

TTFN

Thursday, February 23, 2006 2:10 PM CST

Benny has been admitted to the hospital. His pain was out of control. I gave him pain medicine at about 9 last night and at 12 am it had worn off and he was crying and actually told me he couldn't take it anymore. While I was picking up the pieces of my broken heart I called to see if I could bring him in for IV meds. We were in a room by 2 am and they started him on Dilaudid. We now know Benny is allergic to Dilaudid. He started itching and his oxygen saturation started to fall. We gave him steroids and oxygen and that helped him. His stats were still low later in the morning so he had a chest x-ray. It came back fine. He is getting a bone scan tomorrow. Now his stomach is causing him a lot of pain as well as his arm. He is back on Fentanyl, but if that stops working I have no idea what we'll give him since he is allergic to everything else. That's it for now. I will update if anything changes.

Tuesday, February 21, 2006 5:40 PM CST

It has been a rough few days. Benny started complaining about his left arm hurting last week. At first he just said it hurt a little when he bent his elbow. It has gotten progressively worse over the past 4 days. He barely slept last night because it was hurting so bad and Tylenol wasn't doing anything. I didn't take him to the emergency room because I had an unfortunately good hunch about what was causing the pain and knew we would go to clinic first thing this morning. Derek had hoped that maybe Benny somehow broke his arm and that is why it hurt. I was not so optimistic. When we got to clinic today Benny was still in pain and looked and felt miserable, the doctor tried to convince me that it could very well be broken, which I really hoped it was. It is a sad world we live in when I hope that my child's arm is JUST broken. What was supposed to be a 3 hour clinic visit turned into an all day stay. Benny got chemo, and blood, which was a surprise because none of us were expecting this chemo to affect his counts. He also got x-rays that confirmed that his arm is unfortunately not broken. That would leave one obvious, and evil culprit...cancer. He has had cancer on several of his bones for awhile now, but it has never caused pain before. I go through fazes where it seems like nothing will make me cry and then there is the faze I have been in for the past few days where I can barely look at him without crying. To know that your child's time on Earth is so limited and to watch them endure so much in such a short time is horrific. What is worse is that I am selfish and want to keep him here with us forever. I am forever afraid that my selfishness will take over and not allow me to see what is right and fair for Benny. I question our choices and reevaluate on a dayly, sometimes hourly basis trying to stay true to what we beleive is right...Benny deserves not to be in pain.

Benny is feeling better now since we gave him Fentanyl at the hospital for the pain and I have been OK' d to give him IB Profen, which is normally not allowed while receiving chemo because it inhibits platelet growth, but this particular chemo doesn't affect platelets. I was also given a script for harder hitting meds should Benny need them. For now we are just going to watch and see what happens. Hopefully the chemo will start to kill the cancer that is causing the pain, if not we will have to make a new set of decisions, yet again.

SIGH

Tuesday, February 14, 2006 1:03 PM CST

Happy Valentines Day everyone. We are at clinic right now. We have been here since 8 am and will be here until about 6:15 tonight. Benny got his first round of chemo and is doing great. Except for the fact that he smells like creamed corn, you would never guess that today was any different from any other day. His chemo was the color of grape kool aid. That was cool since purple is one of Benny's favorite colors and also a fitting Valentine color. He is now lounging back on the examining table snuggled with a blanket watching his favorite clinic movie, The Nutcracker. We are just chilling out and waiting right now. They have to do periodic blood draws and want to keep an eye on Benny for a bit since this is a new drug and it is Benny's first time getting it. We will be here tomorrow for blood draws. We have Thursday off and then will be here on Friday for his second dose of chemo then we get the weekend off from clinic and start again next week.

Sunday, February 12, 2006 5:26 PM CST

Hello all.

Benny's latest blood culture hasn't grown anything so it is safe to assume that the Vanco cleared up the infection. We will be doing the prep tests tomorrow for Tuesday's chemo. Benny and I will also be appearing in a little film aimed at getting wealthy people to dig deep into their pockets and help fund much needed research and studies. If Benny's big brown eyes cannot persuade people to donate to such a worthy cause then there is seriously something wrong with the world.

Thank you Angel Jennifer, Kathi and Carol for the Valentines gifts for us all. You are all ever so thoughtful.

Benny is feeling good and has spent the majority of the weekend playing outside with Jeremia and Conrad. The weather has been so beautiful we are soaking it up as much as possible. Conrad discovered that cacti are not friends. He fell into one. Luckily he was wearing a long sleeve shirt and pants , but even so, some of the thorns worked their way through and I had to take tweezers to Conrad's shins. One of these days Derek and I will get around to renting a dumpster and doing away with the evil cacti. I think that some are pretty to look at, but kids and thorns do not mix, so the cacti will have to go...eventually. :)

Wednesday, February 8, 2006 9:19 PM CST

Benny's blood culture is growing. This means he has a bacterial infection of some kind, which proves we were right to hold off on the trial. It is however, frustrating because this now means we have to wait until Tuesday to start the chemo. Benny started Vanco today and seems to be doing ok. He says his left leg just above the knee is hurting him and is particular about how he sits and how you hold him because of it. I am scared that the disease is running rampant, going unchecked and here we are treating an infection instead of treating the cancer. I know that we are doing what we are supposed to be doing, but cannot shake this feeling of impending doom. All I really want is to be able to have all of my children be happy, healthy, and alive. Is that so much to ask?

Tuesday, February 7, 2006 7:42 PM CST

Well Benny didn't start treatment today. He woke up with diahrea. He is fine now, but they didn't want to risk confusing illness with possible side effects. He will start the trial on Friday. We will redo the EKG's and bloodwork Thursday, get the chemo Friday, and then come in on Saturday for re-checks. Clinic is closed on Saturdays, but Shelly (Benny's trial nurse) and Dr. Bagatell are coming in on their day off so we can start this week. I didn't want to wait until next week and either did they. I am glad we are all on the same page. That's it for now. I am going to TRY and make it an early night...we'll see if it works.

Monday, February 6, 2006 10:17 PM CST

I am exhausted. Today was a long day, but tomorrow is going to be even longer. We didn't have to stay at the hospital all day like we originally believed, but I had to make three trips there, because there were some hiccups with the blood work. Benny handled all three blood draws like a champ. He was a little irritated that we had to keep coming back, but his day was still good. After trip one, but before trip two, Kara took him to the build a bear workshop where he got to build a batman bear. He is very impressed with the fact that the bear has a "real pretend" heart inside him and that he gave him an air bath. Kara is going to take Jeremia to do the same thing later this week and he keeps asking me "What day is Kara taking me" I had no idea making your own bear was so important, but I know now. So that was all this afternoon and Benny was feeling fine. It is amazing, absolutely astounding how quickly things change. Benny now has a fever and feels like poo. He went to bed without eating more than a bite or two of dinner. I asked him if he felt icky and he said no then thought for a second and said "actually I kinda do feel icky" He rarely complains and has programmed his brain to automatically answer that he feels fine when asked, in order to avoid medicine, hospital, or any other kind of "treatment" us adults force on him. I think most times he thinks the cure is worse than the ailment. I certainly can't blame him. That is why when he does complain it worries me so. I talked to Dr. Bagatell and what I feared might be, is. If he still feels yucky tomorrow, we will have to postpone starting the trial for a week which means that we will have to redo several of the tests we have been doing the past few days, including the EKG's which he absolutely despises. He hates having stickers on any kind unless it's a band aid. The fact that they have to stick 10 sticky sensors to various parts of his body and then attach wires to every one, irritates him to no end, and he doesn't hesitate to show his displeasure to anyone within earshot, and when you are four years old and pissed off your screaming voice can carry across an entire hospital floor. Needless to say I am hoping to avoid making him suffer through "sticker trauma" in the future. It is surprising that with everything this poor child goes through and has been through the one thing that can freak him out in a split second is stickers. Radiation? CT scan? Waiting for endless amounts of time? Bone Marrow Biopsies? Chemo? Hospital stays? Blood draws? Throwing up? He doesn't bat an eye. Stickers? Holy cow look out cuz you are in for a fight.

I am hoping this is just one of Benny's random meaningless fevers and not the beginning of some infection. We will have a better idea tomorrow. If he has a fever then we will go to clinic for cultures and then most likely come home. If he doesn't have a fever we will stay and go forward with the trial and be at the hospital for at least 8 hours. I am dreading this, not because I am not used to spending endless hours at the hospital, but because Jeremia has a Physiatrist appointment smack dab in the middle of the day that cannot be rescheduled he will not be going to school. All of our Nanny's/sitters/backups are unavailable so it will be me trapped in a tiny room with three miserably bored kids ALL day long. I told Derek to be prepared to give me a back rub when I get home and that I doubt I will be cooking dinner. He sympathizes, but I doubt I'll get the back rub just the same.

OK that's it for me. I must go to bed and try and get some much needed sleep.

Amy

Thursday, February 2, 2006 10:42 AM CST

Benny is doing well. He has Friday and the weekend off and then Monday we will be in clinic for at least 8 hours for blood work and other misc. tests. Tuesday is the first day of the new chemo.

I had my ultrasound on Tuesday and we now know we are having a boy. For those of you keeping count that is 5 boys no girls. I think it is awesome. I was wanting a girl, but only so we wouldn't have to think of another boy name. We have a name for this next boy now, but we are not telling anyone yet, we still need a middle name.

Thursday, January 26, 2006 3:59 PM CST

We have a schedule for next week. Monday is an echo. Wednesday is another Bone Marrow Biopsy even though he just had one. It has to be done within 7 days of the beginning of the study so that is why poor Benny has to have another one so soon. His back is still sore from the last one. Friday is a CT scan and then the following Monday is an EKG. Tuesday the 7th will be his first day of chemo. His hair is already starting to grow back. I am going to miss his gorgeous bald head. I will of course take either way but he is so friggen' cute bald.

Jeremia thought it was a good idea to play with a cactus today. I asked him why, but he says he doesn't know. I asked him if it is something he will do again in the future and he said NO WAY. It wasn't even one with big thorns it was one of those hairy ones that have microscopic pokers. I tweezed out as many as I could find, but he says there are still some in there, but he doesn't know where and I can't see them.

My OB appointment went fine. We listened to the babies heart beat and the Dr. gave me antibiotics for this sinus infection that has been tormenting me for two weeks. I look forward to being able to breath out both of my nostrils simultaneously...ah the simple joys.

That's it for now. I hope everyone has a spectacular weekend.

Wednesday, January 25, 2006 8:34 PM CST

I don't really have too much to report. Benny is doing OK. He is a little on the whiney side and says he isn't feeling too great, but nothing specific. We have clinic tomorrow. I am hoping that we will get some sort of schedule for all of the tests that are supposed to happen next week. They are just extra tests that go hand in hand with the trial and in six weeks they will do all of the same tests again to hopefully get a good idea of how the trial med's are working. If they aren't working then we will reevaluate again and make the decision of what to do next. I started grief therapy today. We haven't come to the unfortunate part of this journey that we have to say goodbye to our amazing brown eyed little man, but I feel grief at the thought of what's to come. I will never be able to prepare for what is to come, but my hope is that I can handle it in the healthiest way possible and I will need an outside ear for that. I cannot even begin to wrap my brain around the enormous loss and grief that our little family has in our future. I can only hope that we will somehow pull through this and be able to heal.

I have an OB check up tomorrow, but I don't find out what we are having until February 3rd. Derek and I will be in Phoenix this weekend for my grandma's service.

That is all I've got for now except thank you's for everyone's condolences and also a thank you to Derek's childhood friend, Shawn, for all of the support he and his friends have been throwing our way.

Sunday, January 22, 2006 11:23 AM

Well Benny's scan didn't go too great. For starters, an MIBG scan averages an hour, but Benny's sedation wore off halfway through the scan and they couldn't finish the scan until they found an anesthesiologist to put him fully under. Due to hectic surgical schedules, they didn't find one for Benny until about 3 PM. Benny hadn't eaten or drink en anything all day and was very displeased to put it lightly. Who could blame the poor child? Anyway what was supposed to be a two hour day at the hospital turned into an eight hour day. As if that wasn't bad enough the results from the scan and the BMA weren't good. Benny's disease has progressed. He has a significant amount in his bone marrow, the spot in his neck is still active, the spots on his bones are still there and the one on his femur appears to have grown. It is time to decide on a different treatment. We are leaning towards a Phase I trial that they have going on here. It seems like it is a fairly easy regimen. There are no guarantees it will work, but we feel like it is a good time to try this treatment. We have not run out of treatment options yet and Benny hasn't run out of spunk so we will keep fighting for now.

Wednesday, January 18, 2006 7:24 PM CST

Benny's bone marrow biopsy was today. He is doing well. No results yet though. He has a scan tomorrow and we should have results before the weekend, fingers crossed. Jeremia's oral surgery was today also. He now has 8 caps in his mouth for the bargain price of about $80 a tooth. He is doing good, but I think may be permanently scarred though, as he is now terrified of the dentist. I am hoping that the fear will fade by the time his six month check-up comes around.


My Grandmother who has bravely fought cancer since November 03, just two months before Benny was diagnosed, passed away this afternoon. I am thankful that she is no longer in pain, but will miss her always. I love you Grams.

Monday, January 16, 2006 1:26 PM CST

HOME!

Thursday, January 12, 2006 12:40 PM CST

Benny was admitted yesterday afternoon for fever and neutropenia. His heart rate was very high and he had to get a bolus of fluid. His fever comes and goes as usual. He is all puffy from all of the fluid, but he is feeling ok. Yesterday he was achy, sore and pitiful. He isn't as bad today. I doubt we will get out before the weekend. I will update should anything change.

Tuesday, January 10, 2006 9:57 PM CST

Benny had a CT on Monday. We haven't heard anything about it so we are thinking no news is good news. He had chemo all week last week and his last day of radiation was last Thursday, so with the exception of some scans next week he has a few weeks off. The down side is he is going to be neutropenic very soon. I hope he doesn't get any fevers this time, because being admitted sucks. He has a Bone Marrow Biopsy on the 18th and an MIBG scan on the 19th. Jeremia's oral surgery to fix eight of his back teeth is also on the 18th. Derek and I have become exceptional at dividing and conquering. I will take Jeremia to surgery and Der will take Benny to his stuff.

We find out February 3rd what the baby is, that is as long as he/she cooperates and shows the goods. I don't know why we even bother...we all know it's going to be another boy. That's fine with me because we have enough drama in our lives without adding a dramatic girl into the mix.

Amy

Sunday, January 8, 2006 7:30 PM CST

Yesterday was mine and Derek's 11th wedding anniversary, but more importantly it was a day that fulfilled Benny's last big wish...to see real monster trucks. We all had a blast. Huge thanks to uncle Craig for setting this up, and big thanks to Big Foot driver, Dan Runte, for hanging out with us and letting the boys up into Big Foot and also giving them souvenirs. The boys' eyes were as big as silver dollars. They were so thrilled! It was incredible. Our seats were awesome. We got to go into the pit before anyone else and got to take our time checking out all of the trucks. It was a day we will all remember for a long time!

Monday, January 2, 2006 10:33 AM CST

Happy New Year!

Benny has to be admitted today to start chemo and since clinic is closed, he will be inpatient for the day, but he doesn't have to spend the night. We will resume outpatient chemo tomorrow when clinic reopens. This is the 6-8 hour day chemo. His last day of radiation is Thursday and he has a CT on the 9th to see where we stand with the tumor in his neck. I know it has not grown, I am fairly sure it has shrunken, but could we be so bold as to hope that it is completely gone? I am afraid to hope for too much.

Monday December 26, 2005 11:36 PM

Christmas was good. The boys got too much stuff, just like they wanted. I had to take Jeremia to the ER Christmas Eve (Derek's birthday)because he had an abscess the size of a grape in his mouth. He luckily didn't have to be admitted because he didn't have a fever, and it ended up bursting in triage so he didn't even have to have it cut open. He cured himself now he's on antibiotics and we are waiting for the Dentists office to come back from holiday so we can get him in to fix his tooth. Benny was supposed to start chemo again this week, but even though he is not Neutropenic his counts are not good enough to start yet. He is still doing radiation and it looks like his neck tumor is getting smaller. His hair started to fall out again so we shaved it all off today. He looks so damn cute both ways I don't know which I like better, but it is definitely sad what the bald head symbolizes. I have an OB appointment Wednesday. I am sure I am forgetting to write about all sorts of stuff, but I am just proud that I actually updated after over a week. Can you tell I have NO motivation to do much of anything? There are so many e-mails I need to return and a few favors I need to do, but I don't know when I will get to it. I am even to lazy to apologize about it. It is what it is. I hope everyone is doing well and had a great holiday.

Sunday, December 18, 2005 5:00 PM CST

HOME! It is really hard to have your child stuck in the hospital when he looks and feels fine. I completely understand the need/desire to be cautious, but with the exception of the first day he felt fine the whole time he was in the hospital. We are all in a dysfunctional funk from it all. Benny's been in the hospital many many times, but this was the first time since last year that he was admitted for more than a few hours, so we had forgotten how much it sucks. It's kind of like the pain from childbirth, you never forget it hurts, but you definitely forget how bad it hurts. It's so hard on Jeremia. He gets so bored. If he's home he's bored because Benny's not there and if he's at the hospital he's bored because we are stuck in a tiny room. I am trying not to let the fact that this is just one of many hospitalizations to come get me down, but it's not easy. They say they want to keep us out of the hospital as much as possible, but I don't see it happening. Anyway the important thing is that we are home now. He has to go tomorrow for radiation, clinic, and possibly platelets, that will take several hours, but at least he will be coming home and we can all pretend to be somewhat normal. 6 days left till Christmas and we have only bought two presents so far..............EEK

Don't forget to buy an ornament or two for Benny's tree at www.LunchforLife.com, if you haven't already. To the many who have already, thank you!

Saturday, December 17, 2005 10:25 AM CST

I hate it when everyday they say you will probably get to go home tomorrow and then when the next day comes they say not today tomorrow. It would be easier if they just said from the get go that it would be a week, not that they know what is going to happen, but then that way we wouldn't get our hopes just to be disappointed. Needless to say we have been told yet again "one more day" grrrr. Benny feels good and is ready to go home. Derek has been spending the night with him every night, and they still have not gotten the poor man a cot. Thanks to Angel Jennifer and cub scout pack 178, Den 6 for the packages you sent.

Friday, December 16, 2005 6:23 PM CST

Well they were going to let Benny go home today, but while they where in the middle of discharging him, he spiked another fever. His fever is gone now and once again if it stays gone he can come home tomorrow, which is a good thing because he is starting to go stir crazy. I can't say that I blame him.

Thursday, December 15, 2005 10:25 PM CST

Benny's fever is gone. He got blood today. They are talking about letting him go home tomorrow, if his temp stays normal. We found out today that he will be getting radiation through Christmas. He is feeling and looking better since he got blood. I am exhausted and heading for bed, but wanted to let you all know Benny is OK.

Wednesday, December 14, 2005 9:50 AM CST

Benny is at radiation right now. We got a call yesterday afternoon saying that he could start today. I love how fast acting they can be when they need to be. Benny woke up with a fever so I called to see what we were supposed to do and they said we could give him Tylenol to make him comfortable and after radiation he will have to go up to clinic for a blood draw so they can do cultures. I already know that it is whatever Jeremia had. I am sure it's viral so there isn't really anything they will be able to do about it. Benny was whiny and didn't want to leave without me. Poor baby just doesn't feel good today. Jeremia is still sick and still hasn't gone to school so Benny is going to be sick at least that long, but probably longer since his counts aren't very good. I hope it doesn't turn into anything more serious. I also hope that radiation works on his tumor. I am not positive how soon we will see results, soon I hope. I am just one giant ball of hope right now...


*UPDATE* 12/14/05 9:38
Benny has been admitted because he is neutrapenic and has been fighting a fever all day. Benny is such a trooper. He feels like crap, you can see it in his eyes, he is burning up with fever, but not one single complaint. He is a wonder! Derek is sleeping at the hospital with Benny tonight so he can take him to radiation first thing tomorrow morning and then my shift will begin. Hopefully neither Derek or I will get whatever this yucky crap is. Fingers crossed.....

Tuesday, December 13, 2005 2:55 PM CST

So last night during Benny's bath I noticed what I thought was a bruise on his neck, upon further investigation I saw that his neck looked lopsided. The side where the tumor is was much bigger than the other side. True to tumor form you can only see it when he holds his head a certain way, but it is definitely there and definitely bigger than it was just two days ago. You can feel it, it is big. The "bruise" is actually his vein being flattened by the pressure of the tumor. I immediately called and spoke to the Oncologist on call and said we were coming in today. So we went today and it is safe to say that I am not the only one who is freaked out about this. Dr. Bagatell called Dr. Stea and asked him to speed up the plotting for Radiation. He complied and Benny will be starting either tomorrow or Thursday. Obviously we will not be able to go on our vacation next week as Benny has to go for radiation every day. I hope we will be done before Christmas, but mostly I just hope that this will work. I know that we cannot win the battle, but I was hoping for more time. I know that no amount of time will ever be enough, but this is all happening too quickly. Much more quickly than I had hoped. I am finding Christmas shopping very depressing. I am having a hard time with it. It should be a happy time, but all I can think is this is going to be Benny's last Christmas, which should motivate me to make it spectacular, but it's just so damn hard. Facing the loss of a child goes against all that is natural. My brain revolts at the mere thought of it and wants to laugh it off as an impossibility as opposed to the fact that it is. I want to give up and be allowed to die with him, and have to remind myself that I need to be strong for my other children who don't deserve any of this and certainly don't deserve to lose their Mom along with their brother, but giving up would be so much easier than what we are going to face. It is going to take all of our strength and then some to face the challenges that are ahead, and stay true to ourselves and not allow desperation to take over like I fear it will.






Please remember to donate what you can to Lunch for Life. It is too late to find a cure for Benny, but we can find a cure for the thousands of children who haven't been diagnosed or even born yet. Neuroblastoma will not give up so we can't either! www.lunchforlife.org click on the giving tree and then on Benjamin's name to give him a chance to go to Disney World.

Monday, December 12, 2005 8:00 PM CST

We have this week off from chemo/clinic. Last week was a very long tiresome week, but we made it through like I knew we would. Jeremia is sick and stayed home from school today with a fever. If Benny gets it we will probably have to be admitted to the hospital. Benny is feeling fine and doing good. His hair is still firmly attached to his head which surprised me. I love him with hair, but I also love him bald. That head is irresistible, perfect and round it just calls out to be rubbed. That is how he got the nickname Moonie or Moonman because his head is round and shiny like the moon when he is bald. Although his hair is holding on strong it will eventually fall out sooner or later, if not with this current treatment then with the next treatment.

Please remember to donate what you can to Lunch for Life. It is too late to find a cure for Benny, but we can find a cure for the thousands of children who haven't been diagnosed or even born yet. Neuroblastoma will not give up so we can't either! www.lunchforlife.org click on the giving tree and then on Benjamin's name to give him a chance to go to Disney World.

Wednesday, December 7, 2005 9:30 PM CST

We are over the Wednesday hump. Only two days left of chemo! Benny is doing really good. He has been feeling great and hasn't had a hard time so far.

It seems impossible to imagine that I forgot two very important details about Benny's tumor in his neck, but I did. First is that Dr. Stea the Radiologist Oncologist says Benny's tumor is the size of a golf ball. You can be told that something is 22 mm and you can see 22 mm, but it doesn't have the same affect as envisioning a golf ball. The second thing-a very important fact-is that it is dangerously close to his esophagus which is a good reason to be aggressive and is why we have chosen a more aggressive chemo and radiation instead of some of the other options. If this tumor grows much bigger it will start to inhibit Benny's ability to breath. Enough said.

OK onto something not so flipping depressing. Thank you Angel Jennifer for starting Benny's Lunch for Life Giving tree. Everyone who reads this should go to www.lunchforlife.org and donate at least $5. It goes to Neuroblastoma research and Benny will get an ornament on his tree which enters him into a Disney World raffle and for every 50 ornaments he gets he will receive a gift from Toys R Us. It's the giving season!!!!!!! Neuroblastoma needs to be put out of business!!! The sooner the better! I will give you Angel Jennifer's code she left in the guestbook 15073 and our code is 15459 either one will get Benny and extra ornament on his tree.

Tuesday, December 6, 2005 7:55 AM CST

We are leaving for clinic right now, but I wanted to update quickly so it would stop nagging on my brain. Everyday I think about updating and then procrastinate and/or talk myself out of it. I am not sure why. Benny started Topo/cyclo (chemo) yesterday. It's not giving the chemo that takes so long, it's the fluids. Benny has to be hydrated to a certain point before they will give the Cyclo. and then he has to get like a 2 hour flush afterward. We had an appointment with the radiation oncologist at 2pm yesterday. Benny was still getting fluids so we went down to radiology with him still hooked up. I pushed Conrad in his stroller with one hand and with the other hand I pushed Benny on his IV. He didn't used to like to stand on the pole and let me push him, but he does now. We were quite the site. We stopped in the cafeteria and got a bite to eat before going to radiology. Maneuvering around the cafeteria with a stroller and trying to get food is hard enough, but add a four year old with an IV and it gets even more interesting. People kept telling me "boy you sure have your hands full", I just smile and think, if they only knew. Today is another long and full day. After chemo we go back to radiation to start the plotting which means lucky Benny gets to lay on a table and hold perfectly still while they draw on him and take scans. I say lucky Benny extremely sarcastically, because my mister Moonie Bird would rather get 100 needle pokes than let people draw on him. It is going to be a very long and exhausting day, which is probably why I am allowing myself to do an update, yet again trying to procrastinate. Derek is stuck downtown today for jury duty. Everyone in Tucson got a summons this month. Dr. Bagatell is at the courthouse today just like Derek. I got a summons for later this month. Dr. Bagatell said she will right me a letter if I would like so I might not have to go. She said and I also think that jury duty is the last thing I need to be dealing with. Oh well that's enough for now we are going to be late. TTFN

Thursday, December 1, 2005 3:49 PM CST

Benny's disease didn't respond to the chemo we were trying. The spot in his neck was about 18 mm at relapse and it is now 22 mm. This is not good. His bone marrow results are a little confusing. It is unclear at this time if it is any worse than it was, but it is reasonable to believe that it has gotten worse too. The idea of his marrow clearing while the tumor in his neck grows doesn't make sense. Bone Marrow results obviously aren't always clear cut.
We are trying to create a new plan of attack and so far I think we are going with radiation to the spot in his neck. Plotting for that should start next week. Time is of the essence. We will be switching to our favorite standby for chemo Topotecan and Cytoxin. My hopes are high that they will be as effective in shrinking the tumor this time as they were back when we couldn't seem to get Benny's marrow to clear. The downside of these chemo's are that we will be in clinic for about 7 to 8 hours Monday through Friday, and Benny will lose his hair and his counts will go down where as with the chemo we just tried his counts held steady and clinic was only about 2-3 hours a day. I am dreading all the yuck, but hoping it will help. The other treatment option we would like to explore is MIBG therapy, but they don't offer that in Tucson so we will have to decide which hospital we want to go to I think the closest is in San Francisco. We would also have to figure out how to pay for the flights and accommodations, and after school care for Jeremia while Derek is at work. I don't know if I would take Conrad or not, I am thinking I would, but I can only do the She-ra thing so long. Dr. Bagatell is looking into how long we would have to be out of town, but it would at least be a couple of weeks. It will be easier to make plans/decisions after we have gotten all the info we need.

A wonderful man named Kenny Kraetz was kind enough to take Benny, Jeremia and Derek on a helicopter ride yesterday. They flew all around town and loved it. The same helicopter they flew in normally costs $400 an hour, but didn't cost us a dime. Thank you Kenny and Voyager Flight Services and thank you nurse Patti for helping.

I am physically and emotionally exhausted. I am enormously angry and frustrated. The hardest part about these emotions is that there is no one I can direct them at. This is no one's fault. I have been given some brilliant ideas from some people who know their stuff, on how too safely and effectively vent this yuck out. I will be putting some to good use in the very near future. I still haven't gotten my pedicure but I will be doing it this weekend!

I hope everyone has a great weekend.
Amy

Wednesday, November 23, 2005 3:08 PM CST

Benny is doing well. He was admitted for 6 hours on Sunday for chemo. We spent most of the time in the playroom and watching movies. When we were leaving he told me he had a fun day.

One of the nurses in clinic, Patti, has given me a promising lead on a helicopter.

We get a four day weekend and then even though Benny doesn't have chemo next week we will be at the hospital quite a bit. Monday for his CT, Wednesday for his Bone Marrow Biopsy, and Thursday for counts.

Poor Derek received a Jury duty notice for Tuesday. He gets about one a year it seems like, I don't know why.

I was driving Benny to clinic this morning and had to pull over to throw up and Benny didn't miss a beat, he kept talking to me the whole time like I was just passing the time, not heaving. Then he told me don't worry Mom I will take care of you when we get home AFTER you make me my spaghetti. Priorities!

Yesterday while I was making dinner Benny came up to me and said "You know everyone is jealous of us Petz's Mom" I said "Oh yeah, why?" "Because we're all so cute" I busted up laughing and said "Yeah and modest too" to which he exclaimed "I'm not modest, you are!" I cannot beleive the stuff that comes out of childrens mouths. Simply irresistible.

My OB says I am 8 weeks prego now and due July 2. I still haven't had an ultrasound, that will be the end of December and then if this pregnancy is anything like the others my due date will probably change. Time will tell.

I am exhausted in every sense of the word. I would call uncle, but I know from experience that simply doesn't work. I just need to make time for a pedicure. Pedicures have a way of making everything a little better. There's nothing like having pretty toes.

We are staying home for Thanksgiving and I will be cooking which can be a chance for me to zone out, that is if I can keep everyone out of the kitchen- yeah right, like that's going to happen. That's OK we are going to grub on some good food and sit around being fat and happy.

Happy Thanksgiving everyone!

Thursday, November 17, 2005 0:01 AM CST

Isn't that face scrumptious. So cute. I cannot remember if I mentioned it or not and I am currently to lazy to look, but Benny's CT that had been scheduled for Tuesday was rescheduled to the 28th. The Bone Marrow Biopsy is still the 30th. My OB appointment is tomorrow. I think I am 7 weeks but I should know for sure tomorrow. Benny is doing good. He asked me today when he gets to get his tubies back out and I had to tell him never. That sucked, but he just shrugged and told me he loves me. He couldn't be any sweeter if he tried. Simply edible.

Monday, November 14, 2005 10:16 PM CST

Yesterday was a very busy, very fun day. Thanks Dad (Grandpa Stretch), Ellie (Grandma Ellie), Ashby, Ronny, Kiki, and Bobby for fulfilling so many of Benny's wishes in one day. We drove to Phoenix to Grandpa Stretch's house where he had arranged for a house car (motor home) to pick up the boys and take them for a ride, but before that they got to sit on a chopper that my Grandpa Stretch built back in the day. Benny loved sitting on it while it was completely level, but when it was resting on the kickstand and tilted he said get me off of this thing. Jeremia loved it either way. One of Grandpa's neighbor owns an official race car so we walked down the street and the boys got to sit in it and hear it's loud engine. Once they were done with that it was time for a drive out to the desert for a picnic and some quad riding. The boys got to ride on a huge quad with Grandpa Stretch and then got to take turns driving a mini quad all by themselves. Jeremia went on a ride down the road with Grandpa on the chopper, but Benny politely declined. It was so much fun and when it was time to go home Benny tugged on my hand and made me bend down so he could tell me "I had a happy day Mama". The boys had a blast. Thanks Dad for arranging it all! Now all we have left for his requests so far are the monster truck and the helicopter. Benny's uncle Craig has made awesome surprise arrangements for the Monster Truck - in January Benny is going to get to ride in Big Foot. How awesome is that? All we have left is the helicopter. I have talked to several local news stations about their news copters, but so far no luck. If anyone has any ideas I am all ears.

Saturday, November 12, 2005 11:29 AM CST

Hello all. Benny is feeling good. Chemo starts Monday again and of course CT is on Tuesday. We are all doing pretty good. We have company coming today and then tomorrow we have a surprise for Benny. It should be a bunch of fun for the boys.

TTFN

Thursday, November 10, 2005 10:24 PM CST

Benny had clinic today. His counts are OK. He has an ear infection, but I already figured that. He is starting antibiotics and his ear should be feeling better by this weekend.

I can feel myself starting to get despondent. It happened when Benny was first diagnosed and I was pregnant and depressed and couldn't take antidepressants because of the baby. I am in the same boat yet again. The only difference this time is that I recognize what it is and remember the feeling all too well. I am angry! I am sad! I feel helpless! Part of me wants to cry all of the time the other part of me won't let myself. I can't feel happy or excited, I try but I think it is a side affect of not letting things hurt as bad as they should, instead of numbing just one or two emotions like sadness or anger it numbs them all. This has got to be a coping skill of some kind. I feel distant, detached somehow. I wish I could explain it better.

This can't be real. How can this be happening? I realize that there is no point asking why because nobody knows. There isn't anyone to take my anger or frustration out on so where does all of this angst go? It just sits and simmers within me, and you know that can't be healthy. I am being as proactive about this all as I can be. We go to a support group with other parents who have or have had sick kids, I read, I talk about how I am feeling I try not to bury my head in the sand and to take what information I have and cope. I know I sometimes come off sounding so matter of fact that it throws people off. I have many people who are here for me and many who say they will do whatever I need them to do. The problem is I don't know what anyone can do. I don't want to burden everyone with my constant droning on and on and it hasn't even gotten to the really bad part yet. The funny part about this is that I can go from one extreme to the other in the blink of an eye. One moment I won't feel like talking to anyone and the next you can't shut me up. I am so very confused and I know there aren't any quick fixes. I am so afraid of the future. I want to stop time. I hate the fact that my baby is going to die and the world is continuing on as if all is normal. I know it is incredibly selfish of me, but I want everyone to stop and focus on this outrageous tragic thing that is happening to my family, to my baby. If I feel this bad now while he is here and feeling decent, I cannot fathom what is to come. I don't ever want to find out what it feels like to lose a child, but I obviously don't have any say in that. It is what it is.

Part of me is embarrassed and self conscious to share this all here for who knows who to read, but the other part of me the one who is in control right now knows what a release this is and that I am letting just the slightest bit of steam out of the pressure cooker that is my brain, and then there is the guilt for turning this into being about me, when it isn't and shouldn't be.

Wednesday, November 9, 2005 3:03 PM CST

Benny has clinic tomorrow. His right ear has really been causing him a lot of pain. He has also been complaining about him tummy and his head hurting. It's mostly at night that he doesn't feel well, during the day he does good. He has a CT on Tuesday to check for cancer progression and then a BMA (Bone Marrow Aspiration aka biopsy)on the 30th. It is a strange thing to be so antsy for things to happen and at the same time dread them. It has been this way since the very beginning, but now that the stakes are so much higher it is multiplied by a zillion. Wanting/needing to know, but partly not wanting to know. Oh well I would always rather know than not know even if it's bad news, because then you at least can attempt to make a game plan. Let's all hope for the best possible news, that the cancer is responding to the chemo or at the very least not growing.

Saturday, November 5, 2005 10:53 PM CST

As I am sure you can imagine we are very busy in the Petz household, so it wouldn't come as a surprise that we bought pumpkins for painting and then carving but didn't get around to actually carving them until yesterday. I know Halloween already happened, but a silly fact like that wasn't going to stop us. The boys did a great job and Conrad even stood on a stool and supervised.
This week is Benny's week off of chemo. He only has to go into clinic on Thursday other than that he is a free bird. He is feeling good, but he and Jeremia are bickering constantly like a couple of old men.
Capone is scheduled to get the big snip-snip on Monday. Beans the cat gets snip-snipped on Thursday. With all of this neutering I think Derek is getting nervous, which brings me to the latest news. I, the woman who swore she wouldn't do it again, am pregnant. No kidding you this time, I really am. This is very interesting timing, but how could we be anything, but happy. I was pregnant with Conrad for the majority of Benny's treatment, so I have experience with being pregnant in high stress situations. Sigh.....

That's it for now.

TTFN

Amy

Tuesday, November 1, 2005 10:44 PM CST

They had a good Halloween and they were adorable. Benny was a bat ballerina. Check out his awesome pink flame shoes. Jeremia was Batman and he took the role very seriously. He mastered the scowl and the cape swoop thing. Conrad was a chunky skeleton, bet you didn't know there was a such thing as a chunky skeleton, but there's the picture to it.

Benny is absolutely hating his port (his tubies under his skin). He has to get poked in order to get accessed and he is still swollen and sore from getting it put in. His counts aren't too hot so it is taking awhile for it to heal. He is feeling good, but is a little on the moody side and a bit tired. I can't blame him...I feel that way and I am not getting pumped full of crap. He is still quick to smile and loves a good fart joke. The other day he was in full anti needle screaming mode until Patty, one of the nurses at clinic, told him her son was going to be a trashcan for Halloween. That got him rolling. Today someone got him to stop being upset about having his tubie accessed by saying something about farts and all trauma/distress was forgotten. It took me an hour and a half to convince him to go to clinic today. Who knows how long tomorrow will take. He thankfully has next week off! Let's hope the chemo is working and this is all worth it!

TTFN

Sunday October 30, 2005 11:32 PM

Friday was fun, frantic, fast, and fantastic. We were told to stay out of the house until three o'clock so they could get everything put in place. We were at clinic until about 1:30 so by the time we ate lunch it was time to come home. When we got home they were frantically running around scrambling to get everything put in the room. There was stuff everywhere. I put the boys in my room to rest and told them not to come out. They watched cartoons while I ran around trying to help and did interviews with the local newspaper and news channels. Then the police arrived to give the boys an up close look at a squad car. I put the boys in their police uniforms that Tim gave them this summer. They got to touch all of the buttons and make all the sirens blare and talk on the loud speaker. They drove up the street and one startled driver actually pulled over thinking they were being stopped. Jeremia and Benny absolutely loved it. Then when they were done with that they came in the house and went in their room and they were speechless. They didn't know where to look or what to check out first. They simultaneously decided the first thing to do was to climb up onto their individual beds and go down their slides. They played for about an hour and then they ate a little food that Beth and Michael brought from Chuy's. Beth and Michael were Benny's Make a Wish, wish grantor's. After eating it was time for a live news report in their room. The reporter tried her hardest to get Benny to talk to her, but he wanted nothing to do with that so Jeremia was happy to talk for both of them. Later that night they watched themselves on the news. They were on two different channels and both channels had a lot of false information in their reports and took my words out of context, but they did at least use the word Neuroblastoma-same is true for the newspaper. The boys fell asleep shortly after seeing themselves on TV. It had been a long, fun day. They played in their room all weekend. The boys are loving their room and we cannot thank Make a Wish enough!

Friday, October 28, 2005 9:33 PM CDT

Today has been a fabulous day. We have all been so spoiled. There are a ton of people to thank and a bunch of stories to tell, but I just wanted to get the pictures up as soon as possible. I will update very soon with the full story and a list of websites you can visit to donate. Thanks for checking in on us. I promise a better update is coming.

Tuesday, October 25, 2005 9:02 PM CDT

That is the face of the toughest person I have ever met. Sore, achy, and just not feeling too great, but smiling. I woke up with the flu today and actually started to feel sorry for myself-what a loser! Benny had his second day of chemo today and surgery to place his port. It is swollen, bruised and clearly painful and he has been quiet as a mouse not complaining about a single thing. Just sitting on the couch asking for help every once in awhile. I don't know how he does it. He continues to amaze me, that is why it is so hard to accept what is happening to him. I told him today that if I had to do what he does that I would be crying and whining and he laughed and said that I would not. Silly boy gives me way, way, way too much credit. If you are feeling sorry for yourself for one reason or another (I know we all do it) take a long look at that gorgeous, brave boy and knock it off!

Monday, October 24, 2005 3:37 PM CDT

Benny's first day of chemo was today and other that the fact that it took them three tries to get an IV place everything went fine. Tomorrow at 6:30 am is his port placement and then his second day of chemo. Tomorrow is the big room makeover day. How exciting!
TTFN

Cripes-Go figure-I screwed up on the dates. Benny and Jeremia's room is being done Friday, just four more days. :) What a goober I am.

Sunday, October 23, 2005 1:16 AM CDT

Dr. Bagatell called this afternoon to talk about Benny's chemo schedule and also told us Benny's brain scan is fantastically clear. The only thing under his skull is his wonderful little brain...insert sigh of relief here....there really are an infinite number of uses for a sigh. They can be so cleansing. So anyway chemo's starting this Monday the 24th for two weeks then one week off and then start two weeks again. Dr. Bagatell's concern about this schedule is that the second week of the second round just happens to be Thanksgiving week. Clinic will only be open Monday thru Wednesday that week so we will either have to be admitted or sweet talk the BMT clinic into letting us come in on Thanksgiving and Friday. Dr. Bagatell is going to investigate both options but I think what she is leaning toward is having Benny be admitted the Saturday before Thanksgiving for chemo over the weekend and then we would do Monday thru Wednesday in the clinic. I feel like I am giving too much information, but this journal is as much for me as it is for you. It is my way of documenting everything since my brain is mush and has selective memory.

If the you only remember one thing from this post so far let it be that Benny's brain is clean.

Derek and I bought tickets to see Carlos Mencia's Mind of Mencia Comedy tour about a month ago, and the show was last night. I have NEVER laughed so hard in my entire life. My voice was so hoarse last night and this morning from laughing hysterically for two and a half hours. It was something Derek and I needed very much. I fear that many of you have no idea who he is so here is his link, http://www.carlosmencia.com/ but I warn you if you are easily offended DO NOT go there! I cannot think of any therapy better than a good hardy laugh let alone over two hours non-stop.

We saw Finding Nemo Disney on Ice this evening- a few days later than originally planned, but at least we made it. It was a lot of fun. The boys had a blast. It's a good thing the tickets were free (thanks Beth) because Disney doesn't mess around when it comes to how much they charge for souvenirs. Holy crap! I don't know if it's even possible, because I know so little about these things, but if there is stock to buy in Disney, my advice is buy, buy, buy.

Benny has some things that he wants to do and we really want to make these things happen for him while he is still able. The list includes riding a motorcycle, riding in a monster truck, flying in a helicopter, and driving in a "house car" aka motor home. I mentioned these to my Dad this afternoon and he already has two lined up and the other two he has prospects. I was blown away at the amount he was able to accomplish in a couple of hours. Thanks Dad!

Benny and Jeremia's room makeover - ala Make a Wish had been pushed back until November 5th, but everyone came together and managed to push it forward the October 25th which is this Tuesday. Thanks again to Beth and also every one at Baby USA! I am so excited to see it all come together and to see the boys' reactions. They had originally planned on having news coverage of the unveiling, but there was some concern that with Benny's relapse we might want our privacy, but now more than ever is the time to get the word out! Privacy is nice, but when it comes to begging for awareness and or funding we are so there! I sincerely hope that I live to see a cure for Neuroblastoma and maybe just maybe a vaccine for cancer in general.

Cancer Sucks!!!! It is a nasty, greedy, hungry, evil beast that must be stopped! No child should EVER have to go through this hell and no parent should have to feel helpless in saving their child, ever!!!!

Thanks to all of you and your wonderful guest book entries and private e-mails they all mean so much!

Friday, October 21, 2005 1:36 AM CDT

OK so I went to school. I was already feeling guilt for leaving, but then Benny begged me not to go and then I said I would bring him and Jeremia home something and he still didn't want me to go, but didn't want me to forget to buy him a baby or a ballerina. The whole way driving to school I had to force myself not to turn back around and go home. I got to school talked to my Art teacher told him what was up and he gave the standard "I'm so sorry". There is never anything to say, but people have to say something or they feel awkward so they say they're sorry and I believe that they are I just wish there was something that could be said that would make everyone feel better, but oh well there isn't. I made it through about 40 minutes of my art class, which is a 2 1/2 hour class. I was supposed to be working on a drawing that we have been doing for two weeks and I couldn't focus, so I packed up my stuff thinking I could just go get a head start printing pictures in my Photography class. I was wrong. I did manage to stay in the darkroom for about 1 1/2 hours, but in that time I only managed to create two prints and they weren't even good. By that time the actual class had started and the teacher arrived and I told him. He said "I'm so sorry" I nodded, packed up my stuff. Cried all the way to my car and then almost all the way home. Took the wrong streets...thought I might be lost, wondered if I should even be driving since I clearly cannot concentrate, got a hold of myself and made it home to a happy house with a Benny asking where his ballerina or baby was. Needless to say we made a family trip to the store where we searched for a specific baby he wanted, but they didn't have her so he picked out a different one and named her Baby-O. Jeremia got a new video game for his gameboy sp. I don't think I will attempt going back to school anymore. My place is at home with my babies soaking them up as much as possible, besides with classes twice a week having to buy toys every time I left for school would have cost a fortune.

Another big SIGH.......I am full of them these days.

Benny's tummy has been hurting him all night and there is a particular part of his forehead that looks and feels like there is a slight bump there. I have been watching it nervously all week. He told me it hurt there today and asked me to kiss it. I do so hope it is nothing!!!

Sigh
Sigh
Sigh

Thursday, October 20, 2005 2:50PM CDT

Brain scan for Benny tomorrow at 2:45. Monday starts chemo via IV. Tuesday port insertion - no time yet. Benny is starting to show signs of not being well. Everyday it is a little worse. I cannot wait until Monday. I am hoping the chemo will do it's job and halt the cancer from eating Benny up so he will start to feel better. Right now he says he feels icky on a more regular basis than he was. He is starting to say he feels full just like he did when he was originally diagnosed. He is tired and cranky and asks me to fix him and there is nothing I can do except give him Tylenol and cuddle. I think the cuddling is just as much for me as it is for him.

We have decided to homeschool Jeremia through all of this. With all of the appointments and hopefully fun trips we will be taking it will be easier schedule wise not to have to worry about calling him in and such. We will have a couple of tutors and I will work with him as well when I can. I think the one on one attention will also help him through this horrible time when all of our lives are falling apart. The more time we can all spend together as a family the better.

We are hoping to go to Disneyland for Christmas, provided Benny is able.

I have decided to keep going to school for as long as I feel up to it and or as long as Benny's schedule permits.

Speaking of school better get going so I am not late.

I will update tomorrow if we find out results of the scan.

Big Sigh...................

Wednesday, October 19, 2005 1:22 AM

Benny's biopsy went fine yesterday. He is feeling great and looking good. That is why it is so friggin hard to wrap my brain around what I know. Here is what I know. Benny's bone marrow still has normal cells, which is good, but the bad Neuroblastoma cells significantly out number the normal cells, which is horrible.

Benny will be getting a brain scan and an echo of his heart this week, and a port inserted Monday. The fact that he is getting a port, which is essentially tubies under the skin, is great because he will get to be a normal kid who gets to take baths or go swimming, but still be able to get chemo and other meds without having to have an IV started everytime. The added bonus is that I will not have to do daily flushes or dressing changes. Sometime shortly after the port insertion Benny will begin chemo. He will receive chemo Monday thru Friday for two consecutive weeks and then get a week off to recoup then do it for two weeks and so on, indefinitely until it doesn't work anymore, that is assuming it will work in the first place. Once it is discovered that a chemo combo isn't working then we will move onto another kind and so it goes until Benny's bad days out number his good days, or until the chemo stops working. Bottom line is Benny will be on one form of treatment or another for the rest of his too short life. There is no way to know how effective any of the treatments will be nor is there anyway to know how long he has. Months? Years? I think years is a long shot, but not necessarily impossible-only time will tell.

Wrapping my brain around the fact that at some point my baby will take his last breath in my arms and there's not a damn thing I can do about it, is impossible. I am so angry! There are NO words to describe what this feels like. There is nothing that can be said. I don't even know what to say. People want to say something comforting that will make this easier and I find myself wanting to do the same for them. I want to reassure everyone that we will be OK that we will make it through all of this, but I can't. I don't know what will become of us. I am so scared and feel lost.

The only thing I can think to do is try and make life as normal for my kids as possible and get the most out of whatever time we have left with Benny. No matter how much time we have left with him it will NEVER be enough-how could it be? I have nowhere to put all of this anger. I am angry at this word. This stupid word - Neuroblastoma- if I could kick the crap out of this word, or kill it I would. As a mother, as a parent my main purpose in life is to protect my kids. To keep them safe and secure and this evil, nasty, greedy, stupid word has rendered me ultimately helpless. I just don't know what to say, what to do. My brain is spinning. Our world is upside down and I don't think it will ever be right side up again........

Friday, October 14, 2005 7:45 PM CDT

I cannot think of a gentle way to say this so I am just going to say it like it is. Benny has relapsed. There are not enough swear words in the world to express our despair, anger or frustration. Everything still hasn't completely sunken in yet, but here is what we found out today. Benny's MIBG scan yesterday showed spots. There is a spot on his right knee, one on his left arm and there is a questionable lymph node in his neck. Wednesday he will be having a Bone Marrow Biopsy to assess how bad it is. While their is treatment for relapsed Neuroblastoma there is no cure. This means that my baby, my feisty four year old is terminal. I wasn't surprised by the results. I was expecting this to happen it was just a matter of when. I normally hate being wrong, but if I wish I could've been wrong about this. There is nothing anyone can say to make this better, so don't feel like you have to. It is enough to know that you are thinking of us and that you care. There aren't any words for me either right now, but I am sure there will be soon. Right now I am momentarily cried, and talked out, at least until the next mood swing.



10/16/2005 11:38

Just a quick note to let everyone know that I was going nuts with the idea of having to wait until Wednesday for the Bone Marrow Biopsy so I spoke with Benny's Dr. this afternoon and she arranged for it to happen tomorrow. We aren't sure what time because they are going to squeeze Benny in. I will absolutely update when I here any news.

Thanks to everyone for signing the guestbook and sending e-mails and letting us know that you are thinking good thoughts for Benny and the rest of us. Can never get enough good thoughts.

Tuesday, October 11, 2005 11:38

Man am I tired, but I realized that it had been a week since I last updated so here I am, but I am going to try and keep this short even though there is a ton of stuff going on. First all five of us are on antibiotics for Strep Throat. Derek has no symptoms and mine, Benny's and Conrad's have cleared up, but Jeremia's is so bad that the Dr. wants us all on antibiotics so we won't just pass it back and forth. Derek being anti-pill/anti-Dr. when it comes to himself was none to pleased. I didn't give him a choice, but there was some pouting and eye rolling going on. The Dr. also said that Derek and Jeremia's tonsils are huge and should come out. Convincing Derek that the Dr. isn't a quack and that apnea caused by oversized tonsils is indeed a big deal is no easy task. He should know by now just to give in and give me my way cuz I'm gonna drive him nutz until he gives in anyway. Silly, silly man.

This is scan week. Radioactive Isotope tomorrow and scans on Thursday. That and everything else that is going on, that is just too time consuming to go into detail about now, is exhausting.

Alright I am off to bed now and not a moment too soon.

Amy

Thursday, October 4, 2005 11:34 PM

I cannot believe it is almost the one year anniversary of Benny's final BMT. It doesn't feel like it has been a year already. Time flies....

We will be at the hospital most of next week. Benny has scans Tues. Wed. and Thurs. Derek has the week off so he will be escorting Benny to scans while I am up in clinic working on my photography project. I have been given the green light to photograph willing "cancer families". This is a really big deal for me. When I first asked if I could photograph the kids in clinic I was expecting a speech about privacy, liability and then politely told no, but having a kid who has fought cancer gives you a little leverage at UMC and opens some doors that might otherwise be closed. My plan is to frame and mount the photos I select and they will hang in the hospital. I am receiving way more support than I ever could have dreamed and am eternally grateful. I will also be turning in 12 photographs for my final critique in my photography class. I also heard an awesome rumor there is a possibility of my work being published. There are no words to fully express my excitement for this project. The possibilities are endless. The best part of it all is the chance to pay homage to all of the children and families effected by Cancer as well as the phenomenal staff at UMC.

On another note, I think we are at the very beginning of a house full of sick people. I started having a sore throat yesterday, that I was irritated about, but didn't think too much about since I am always having one throat issue or another, but today it was worse and I felt like crap, all hot and icky. This evening poor Conrad started feeling yucky and hot so I took his temp and he had one, it was low, but if it was Benny a year ago we'd be in house right now. I am hoping it goes quick and doesn't spread to everyone, but experience makes me wise to the fact that, this is unlikely. Fingers crossed though.

We just got the estimate for Jeremia's and Benny's dental work that they need and I am not exaggerating here, after insurance it is going to cost over $2,500 - for baby teeth?!? Even though they are eventually going to fall out they need to be fixed because not fixing them could cause problems with their adult teeth and then of course there is the pain factor. I cannot even begin to guess how much it would've been without insurance. I sure hope they are willing to take payments. We will just add it to Benny's growing stack. It is amazing that we are almost at the two year mark for his diagnosis and we still have new bills coming in. We hardly saw any bills for most of the first year. Don't get me wrong there were some and they weren't cheap, but damn if they don't stock pile 'em so you think that it's not as bad as you feared and then when you think it's cool they send them all at once. Last week when I opened the mail box I was shocked to see a huge pile of mail. I was stupefied when I took a closer look and they were all from UMC. You are going to think I am making this up, but I'm not, in one day they mailed me 26 separate bills. Why they didn't put them all in one envelope I can only guess, maybe that was their idea of a joke or something. I opened the first one and I thought oh this won't be too bad because it was only for $22, but they weren't all that small unfortunately. If I didn't think the humor would be lost on them I would mail individual $5 checks per each bill, but it would cost too much in stamps and checks so they will have to settle for one check in one envelope and figure out how to disperse the money themselves.

OK I think I am done now. Never fails when I sit to write a short update it turns into a book.

Til next time....

Have a great week.

Amy

Thursday, September 29, 2005 11:45 PM

The picture at the top of the page is Benny's page from the 2006 calendar that will soon be available at http://www.cafepress.com/cancerfighter. Benny's month is May. Be sure to order one or two or three.... Proceeds from all purchases go to caringbridge families. If that isn't reason enough then just look at that beautiful artwork drawn by none other than Mr. Benny-O. It seems Benny is starting to take after Jeremia and his zest for art. Jeremia is showing him the ropes and teaching him how to be a true artist'. They are also playing school quite a bit, so by the time school starts for Benny next year he'll be ready to skip kindergarten all together. Jeremia says that's what big brothers are for. We have been given free passes to see Nemo on Ice, thanks to our wish grantor Beth who is one of the people that is responsible for the makeover of Benny and Jeremia's room set to happen the end of October. There really isn't too much to report. Everyone is feeling good and we are thankful. Benny is trying his darnedest to outgrow Jeremia, but Jeremia isn't gonna give in without a fight. We are going to have some very big boys if they keep this up.
TTFN
Amy

Sunday, September 25, 2005 8:05 PM

Benny is feeling well. We had a very busy week. Jeremia finally starts speech therapy next week. I met with the therapist last week and signed about a hundred forms. I was also elected VP of the PTA last week. I am pretty excited about that. We had company all weekend and went down to Phoenix to see my Grams today. She has been in the hospital all week with a blood infection and they are running tons of tests to see where it is coming from. She was in good spirits, looked great and we enjoyed our visit. Next week is Jeremia's open house at school, but Derek has to go to that because it is on Tuesday when I have class. I have been asked to be on a panel of parents who talk to potential volunteers about how it feels to be a parent of a child with cancer and what is helpful versus what isn't. I am going to do that this coming Saturday. It is going to be another busy week and I cannot believe that the holidays are right around the corner so it is only going to get busier. Busy is good as long as it is busy doing fun/good things and not busy running to and from the clinic.

Sunday, September 18, 2005 9:53 PM

Benny has finished his final round of Accutane. Scans are the beginning of October. We are all having a really nasty case of allergies. Jeremia, Benny and Conrad all have drainage coughs. They sound pitiful all stopped up and coughing. I don't know what is in the air or why, but there is something that none of our sinuses like, floating around. I am trying to keep them on allergy medicine to keep it all flowing so nobody gets a sinus infection.

I am having a lot of fun with school and am currently working on a project with the hospital that has to do with my photos, but I don't want to jinx it so I am going to keep you in suspense until everything is finalized. I will say though that if it works out, it will be awesome! I am so excited!

The dentist says that both Jeremia and Benny need several fillings and have to have their front teeth capped. I only wish our dental insurance was as good as our health insurance. This is going to cost a fortune. I am confused why Jeremia has to get caps on his front teeth since I thought kids lost their front teeth at the age of six????? They will be knocked out for the procedures so it shouldn't be too terribly traumatic, at least that is what we are hoping.

All else is boring and normal-that's the way we like it! :)

Have a great week everyone!

Amy

Tuesday, September 13, 2005 1:37 PM

Happy Tuesday Everyone.

Capone is doing great. He is one of the lucky ones. I took him to his regular vet yesterday and he is happily surprised at Capone's bounce back. He thinks it has a lot to do with the fact that he was home with us getting love and attention instead of being locked in a cage somewhere, getting minimal attention at the animal hospital. I agree. He is almost back completely back to his normal self. He recovered in record time.

Benny and Jeremia are currently in route to a dentist appointment. They both have horrible teeth and saw our regular dentist a month ago, but Benny wouldn't open his mouth at all so he referred both of them to a pediatric dentist which makes me happy. Derek is taking them since I have to leave for school at 3 and their appointment is at 2:30 and it is 45 minutes away. Der went in at 4 am this morning so he could leave early to take them. That man is a working fool! :)

Benny is still on his final round of Accutane and it has dried him out much worse this time than the past few. He says his skin hurts and his eyes have so little moisture they are bothering him too. I think it's 3 more days until he is completely done...finally!

That's it for now. I have to go get a few things done around the house before it's time for me to leave.

Amy

Sunday, September 11, 2005 1:51 PM

Our Great Dane puppy who is 4 months old was diagnosed with Parvo yesterday. I had to take him to the emergency vet because he wasn't eating and was vomiting. Poor Capone. They wanted to hospitalize him for the mere starting price of $3,000. Needless to say we didn't go that route. We opted instead for outpatient care, because if we can do a bone marrow transplant outpatient we can do damn near anything, plus it was significantly cheaper. The vet says Capone is doing as good as he can under the circumstances and is hopeful that he will pull through. We sure hope so. I don't know how the boys will handle it if Capone dies, but I know I won't handle it very well.

Benny and the boys are all doing great.

Hope everyone had a good weekend.

Amy

Tuesday, September 6, 2005 11:48

I am getting to this update a little late since it is almost tomorrow. It was a school night for me, so it was a very busy day. Today Conrad turned one. I know people say this all of the time, but I cannot believe how fast time goes by. It feels like just the other day I was waddling around the hospital counting down the days until I could finally reap the reward from being physically miserable for 7 out of 9 months. Feels like just yesterday I was roaming the hospital halls in search of bananas for Benny during his BMT while itty, bitty Conrad hung from my neck in his papoose. People thought it was a purse until they would hear a little noise or see a little movement and they would shockedly ask "Is there a baby in there"?. He stayed with me and Benny the entire time through transplant. Benny in his bed Conrad in one of those newborn bassinets we stole from the maternity ward. He was with me every step of the way in Benny's treatment either inside the womb or out. I was so worried that he would be a cranky baby or there would be something wrong with him from all of the stress my body was under physically and mentally while Benny went through treatment, but he is the happiest, most content child I have ever met. The nurses at the hospital would always ask me "Does he ever cry?" Nobody believed there was a newborn in the room with me and Benny. ....Damn thinking about that, I am in awe of our family and what we have been through. So much has changed since Benny was diagnosed. It has been really hard on us all, but we keep on going and enjoy all of the wonderful things that have happened and try and learn from the horrible things.


Anyway my youngest baby is now one! Happy Birthday Conrad!

Also Happy Birthday Grams! Please send my Grams good thoughts and if you pray, prayers. She has been battling Cancer since two months before Benny was diagnosed. Love you Grams!

Benny is doing great! Feeling good and doing all things a four year old should do. He cannot wait for his birthday, it's eight months away, but he is still excited for it, so then he can go to school just like Jeremia. He keeps trying to convince me that he has two birthdays. He is so confused because of all of the gifts people sent him through treatment.

That's all for now. I am off to bed.

Monday, September 4, 2005 11:01 Pm

The boys are off spending the night at Kristy's house. Her plan was to give us a night of freedom so we could do whatever we wanted. It is bittersweet. The peace is nice, but we didn't and don't know what to do with ourselves. We had dinner without having to tell anyone to stop kicking and eat with their mouths closed nor did we have to convince anyone that the "green things" taste good. We didn't have to negotiate how many more bites must be taken before dessert and we got through an entire meal with out having to clean up spilled food, juice or milk. We then made a quick stop at the store for bread and soda water. There were no seat belts/car seats to buckle and there was only Der's hand to hold instead of the normal hand holding chain we form while crossing the parking lot. Once in the store we went straight for the soda and then the bread, never once having to tell anyone to stop climbing, stop pushing things off shelves or watch where they were going before they bump into someone. There were no requests for junk we didn't need. No, Can I haves. No, I wants. No But we NEEDs. While checking out there were no kids to herd through the check out line while telling them to put whatever candy down. When we got home there were no kids to help out of the car. No screaming. No running. No hitting. No biting. No kicking. There was no one to make brush their teeth, take a bath or arguements over whether or not it is actually bed time. There were no goodnight hugs and kisses or last minute drinks of water. No diapers to change. No bottles to make. The house is quiet. It is nice to have a break but I don't know what people without kids do. Thanks Kristy. We can't wait for the kids to get home.

Last night was the first time Jeremia had a friend spend the night. They had lots of fun. Benny was thrilled and Jeremia was actually pretty good at sharing his friend with Benny.

Derek and I spent two hours picking out things for the boys room with the Make A Wish, Wish Grantors. Shopping with no spending limit ROCKS! We are so excited. The boys were at home with the Nanny so they have NO clue what their room is going to look like. The furniture won't be ready until the end of October, and they will do the room then. Can't wait!

All else is business as usual. Everyone is doing OK. Poor Der has to work on all Holidays except Thanksgiving and Christmas so he will be at work tomorrow. I hope you all are having a great holiday weekend.

PS thanks for the hug Carol :)

Wednesday, August 31, 2005 2:51 PM CDT

It can be so very hard to stay positive when so many of the parents, that welcomed me into their on-line Neuroblastoma circles, are losing their precious babies. Precious Beebo one of the very first boys I started reading about when Benny was first diagnosed ,his Mom Kelly is the one who created the Warrior page that brings hope to so many and acts as a quick and easy way for me to check on other NB families, passed away this morning. Please stop by the warrior page and/or Beebo's page to offer this family emotional support through this impossible to imagine difficult time.
http://www.warriors.beebo.info/
To sign Beebo's guestbook click on Beebo news at the top of the page and it will take you to his caringbridge page.

Benny is doing well. His appetite had become non-existent for about a week and just as I started to worry he started eating normally again. The things that all kids do normally, like the stages where they eat everything to stages where they refuse to eat just about everything, when you are constantly worried about relapse these normal stages can be very nerve wracking. I started school last night I am taking two classes Tues. and Thurs. from afternoon until evening. That will allow me to still volunteer in Jeremia's class too. Other than that all is normal.

We are getting ready to leave right now to go pick out the bedroom furniture for the Make a Wish room makeover. That should be lots of fun.

Thursday, August 25, 2005 1:52 PM CDT

Hello all. I am not gonna lie...I am mega stressed out. All of the crap that has happened over the past year and a half must be catching up with me. It just seems like a never ending pile of crap just keeps falling on us. I am just plum warn out, exhausted, can't believe I am still standing. Derek and I seem to be drama/trauma/stress magnets...or maybe it's just me and poor Der is just stuck along for the ride?!? The majority of the stuff that has happened in the past two years of our lives is on that list, you know the one that says what the top stresses in life are. The superstitious part of me now has to take a moment to stop whining and recognize that yes there are many people that have it worse and that I should not be complaining, because all of my sons are still ALIVE and there are way too many Moms and Dads that cannot say that. I will also note that no matter how hard you think your life is, it can ALWAYS get worse. Don't mistake this for a pity party. We have plenty to be grateful for and believe me we are. Now all that aside back to whining. I am exhausted mentally and physically and I am calling UNCLE. Calgon take me away, but not for too long, cuz I would hate to miss anything. Here's the hardest part, I am tired of being in charge, but cannot stand to let anyone else be in control, unless of course they do it MY way. I can admit this because denial would be a pathetic attempt at trying to ignore the obvious. OK, I do not know why but venting with a keyboard is such an emotional/stress release and I needed one, as a matter of fact I would like to order a case of emotional/stress releases, to go please. After all of that if you are still with me I applaud your patience or maybe it was just that curiosity that pulls you to look at a car accident or some other thing that everyone hates to see but cannot look away from, or is that just me? And to think I started this post to tell you all the crazy, fantabulous, surprising news.... I'm pregnant.....haha, I got ya, just kidding. I know those of you who know me personally are probably trying to get your heart and stomach down out of your throat. Relax I am not pregnant. I will give you a minute to recoup.
.
.
.
OK now for the actual surprising, bizarre news. Make a Wish has chosen Benny's wish to be the 26th hundredth or thousandth wish or something along those lines and that equals media and probably lots of it. Whether it is a national or local thing I am not sure. I do not have the exact details, but the press release went out yesterday and Wednesday I am told that there is a good possibility that we will have TV cameras following us throughout the whole process starting with shopping to pick cool stuff out. How big or how small it will actually end up being remains to be seen, but I think it has huge potential to get the word out about Neuroblastoma and of course if I get interviewed I might, hopefully be able to throw in some plugs for some of the great programs/societies that have helped us like Caringbridge, Candlelighters, and locally Tu Ni Dito and Tee up for Tots, and anything else I can think of, if they'll let me. Once you get me talking about Neuroblastoma it is really hard to get me to shut up. You are probably thinking, wait a minute just a paragraph ago she was complaining about stress and now she is allowing the possibility of TV crews to enter her home/life, yeah, yeah I know, but what's one more think on the pile. There is a lot of opportunity here for good things so we are excited. A bonus for the boys is that since it is going to be covered by the media there is a possibility that they will go above and beyond and maybe some of the stores will donate extra cool stuff for their dream room. Although it is Benny's wish, we are treating it like it is Benny and Jeremia's wish because he has felt so left out and wished he was sick too more than once. He went to the Dr. today as a matter of fact and he puffs up with pride whenever it is his turn to go instead of Benny. Boy to an outsider our little family must seem completely insane, but hey after all this I think we are entitled.

OK I think I am done now. If you managed to make it through this entire post you get a standing ovation, even if it is just me giving it.

Saturday, August 20, 2005 2:20 PM CDT

Today is Jeremia's birthday, but we have been celebrating his birthday all week. Our new mailwoman probably hates us because all of the packages Jeremia has been getting in the mail along with the gifts Angel Jennifer sends don't fit in the mail box so she has to bring them to our front door which means she has to go out of her way quite a bit. We need a bigger mailbox. I uploaded some new pictures. Some from our recent visit to Grandma Dory's house and some of the view from our front door of our new house.

The boys are all doing fine and Benny only has one more round of Accutane and then he is completely done with treatment, hopefully forever. He has scans coming again very soon, not sure on exact dates yet though

Hope everyone is having a great weekend.

Friday, August 12, 2005 11:30 PM

Benny is doing good. His face is dry and peely again from this round of Accutane, but other than that he is fine. Jeremia starts school on Monday. I was supposed to register him for school on Thursday, but I thought it would be fun to try and finish all of the unpacking by myself on Tuesday and ended up unable to get out of bed without serious help and extreme pain so we went to the emergency room where they gave me a shot of Torridal (I am sure I have spelt that wrong) some Percacet (spelt that one wrong too) and some Valium and it still hurt like hell. I spent 7 hours there with poor Der and the boys in the waiting area waiting for me to get released. They did x-rays and said they couldn't see anything so they think I probably just seriously jacked up my muscle and told me to see an orthopedic doctor within three days. I called the one they told me to and I was told the soonest I could get in was September 17th. A lot of good that is going to do me since I can barely walk let alone pick up the kids or do anything else that needs to be done, so I have my doctor working on getting me a sooner appointment, but of course it is now the weekend so more waiting. At least I have some drugs to take the edge off and Derek is on vacation this week so that is perfect timing since he will be able to help me. He will have to register Jeremia for school Monday morning. Jeremia turns six on the 20th. He is so excited he keeps making me count the days out on the calendar with him. Benny is excited too because no matter how many times I explain it to him he thinks it's his birthday too. He thinks any day that he gets a gift is his birthday, even Christmas. I keep telling him he's not getting presents Jeremia is, but he won't give in. I hope he isn't too devastated when the day comes and reality sets in. The boys are loving the new house. We have tons of rabbits and ground squirrels running all over the place, as well as horny toads, lizards and things we've never seen before. Our very first night here a giant tarantula was right outside our front door welcoming us to the neighborhood. Luckily I am not afraid of those, especially since it appears we have lots. What I don't like and what I have so far been lucky enough to avoid are scorpions. Oh I know they are out there, I have just so far been lucky enough not to cross paths with one yet, but it's only a matter of time I am sure.
OK that's it for now. Have a great weekend.
TTFN

Friday, August 5, 2005 2:32 PM CDT

Geesh, finally. We are finally in our new house. We didn't get the keys until the first which was Monday....long story. I had switched over all of our utilities to the new house, had the phone and cable shut off. The phone line didn't get turned on until this morning, and they are still trying to figure out why my high speed Internet isn't working so I am using dial up. Anyway so sorry for the huge gap in updates. Benny is doing great. He is on his fifth cycle of Accutane. He is feeling good and having fun. Jeremia and Benny share a bedroom that is bigger than mine and Derek's. We have air conditioning which we had missed dearly. We are all a lot more comfortable now.

There is a ton of stuff going on and we are ultra busy, but I just wanted to take a sec and let you know that Benny is fine.

I will try to update again soon.

Saturday July 16, 2005 10:54

Benny is doing very good. His nose isn't running like it used to.

We are busy getting ready for the move. They pushed the closing date up a week so we are supposed to close the middle of next week. We are very excited and ready to move. The boys are concerned that we will forget to pack stuff so one minute they are telling us not to forget something and then the next second they ask why are you packing my favorite ____. It didn't occur to me that this would be stressful on them too. I remember moving a lot when I was little and I don't remember being nervous about it, only excited. I guess when your life has been dumped upside down, in such a big way, at such a young age, change would make you nervous.

Hopefully my next update will take place in our new abode.
TTFN

Monday, July 11, 2005 1:02 PM CDT

Dr. Bagatell called to tell me that Benny does not have a fungal infection! Yippee! In fact there wasn't anything remarkable about Benny's boogers! :) The doctor who did the procedure feels that the biopsy helped and will continue to help clear the blockages that were there. Benny's nose is still draining but not nearly as bad as it was. I took some pictures of poor Benny's swollen face and am adding them to the photo album so you can see. Even with a swollen face & blood running out his nose continuously he can't help but smile for the camera. He is wearing the same shirt as in the picture above, but it is not the same day. He loves monster trucks and where's that shirt constantly. The pictures don't do his puffiness justice. He looked positively pitiful, but was still full of smiles! That's my superterrific amazingly tough Benny!

Both Jeremia and Benny went to camp today. A day of bowling and music therapy, what a treat!

Wednesday is there first trip to the dentist which should be interesting because they both have horrible teeth Jeremia from genes, I guess, but Benny gets the bonus of genes and chemo. Chemo is terrible for teeth but rotten teeth are better than the alternative.

Here is a link to a quick movie/slide show that is good for both those with cancer and caregivers, because what it says about the person with cancer can also hold true for those who have traveled the long journey with them. www.thesurvivormovie.com

Wednesday, July 6, 2005 12:36 am

Benny is doing well. The surgery went fine. Benny is feeling pretty good. Their is a small amount of swelling around his nose but it is barely noticeable and only slightly tender. There is bloody drainage, but that is to be expected. As predicted the hardest part has been trying to convince Benny that he cannot run and jump, because he feels pretty decent so he wants to run and frolic and be a kid. I wish I had his energy and his spirit. Jeremia is a little concerned about blood coming out of Benny's nose, poor kid worries more than an adult. We have told him not too worry, but he has heard that before so he keeps a close eye on Benny and seems to be reassured by the fact that Benny isn't acting differently than normal.

I obviously do not have any biopsy results yet or I would be posting them The Doctor says it didn't look like anything to be worried about, but like Jeremia I have heard that before so I will just wait and see what the report says.

TTFN
Amy

Thursday, June 30, 2005 2:11 PM CDT

Benny's urine test came back clear, which is great. His blood tests were all normal. The doctor's are still a little nervous about his sinus issues though. Benny will be having surgery Tuesday. They will be doing a culture of the mucus, but also a biopsy. Dr. Bagatell told me she is not worried that it is cancer she is however concerned that it might be fungal. Fungus is BAD. Because Benny has been treated for sinus infection and it has not cleared, they want to test and see if it is just a resistant kind of bacteria or fungus. Fungus is incredibly tough to treat and can very easily become life threatening.

We are going to try our best to have a normal weekend and enjoy fireworks for the holiday. We will worry about Tuesday's surgery, on Tuesday.

On a brighter note...we bought a house! It is on a 1 1/3 acres and has gorgeous mountain views, but is only 15 minutes from Derek's work, 5 minutes from major stores, and 30 minutes from the hospital. I have finally gotten the best of both worlds, a little bit of the country and a little bit of the city. We close July 28th so as long as no unforeseen problems arrive we will be in our new home by August 1st. We are really excited.

Conrad is walking. He is so proud of himself too, he should be since he isn't even ten months old yet.

Jeremia and Benny both enjoyed their first week at camp Magwitch through Tu Nidito. They have gone on field trips to the children's museum, the movies, the sheriff's department and Tumbles for gymnastics.

That's all for now I will update probably on Tuesday.

Have a great holiday weekend!

Friday, June 24, 2005 11:37 AM CDT

Hello all. Benny had clinic yesterday with blood work. Poor guy hates getting stuck with a needle, but at least he gets to got swimming and only has to get poked every 6 weeks. He has had a sinus thing going on for a quite a while. When he had his last CT it showed what they think/hope is just a big sinus infection. He was on antibiotics for 21 days and it is still there. Dr. Bagatell is going to talk to the ENT (Ear Nose and Throat) Doc again and see what he thinks now. Benny might have to have surgery to have his adenoids removed or something along those lines and then there is the possibility that it is more than just a sinus infection. Dr. Bagatell also ordered a urine test which she normally doesn't do. Urine tests can indicate whether a relapse has occurred. Needless to say there is always a sense of worry, but this has me teetering on the edge of being really scared. There is nothing like living in constant fear....and yet somehow remaining pretty calm. It is strange how you can adapt to living this way and how calm you can appear to be when you are really just on the brink of freaking out or at least that is what it feels like.

Hopefully fingers, toes, and eyes crossed it is something that just requires some more antibiotics.

I will update as soon as I know anything more.

Also check out the new pictures :)

Thursday, June 16, 2005 11:00 PM CDT

Things here are going well. Benny is quite moody. That is a side effect of Accutane. Other than the moodiness he is doing very well. Jeremia has decided he doesn't want to go to summer camp any more and Benny won't go without him. Jeremia says it is not the same as last year so therefore not as much fun. The location is different and the people are different, but they still do a lot of fun things so I was surprised. A different day camp starts the week after next and I am sure Jeremia will like it there more because it is at Tu Nidito where they both know everyone and feel comfortable. Let's hope so because they get very stir crazy just hanging around the house and it is too hot to spend too much time outside during the afternoon. After summer camp is over I am hoping to enroll them in gymnastics. They will both have a blast tumbling and jumping and all that cool fun stuff kids are so good at.
Well that's it for now. Have a great weekend!

Friday, June 10, 2005 12:30 AM CDT

I really should be in bed, but I remembered that I haven't shared the great news. Dr. Bagatell called this afternoon and declared that Benny's scans are all clear. She called as soon as she found out because she knew I was on pins and needles. They did discover that our little Benny bear has gallstones though. I was assured that they are not blocking the duct which means that there is no pain so no need to remove his gallbladder at this time, we will just watch it. I am also watching everyone in the house for sore throats because I am the lucky recipient of Strep Throat and the doc said to watch that no one else gets it. This is my third day of antibiotics and it is still quite painful, but I am no longer contagious thankfully and as long as none of the little ones get sore throats then all is well. Conrad had a check up and he already weighs 21 lbs. Benny weighed 30 lbs at the time of his diagnosis and he was 2 1/2. Conrad is a chunky monkey.
OK now I am off to get some much needed rest. Night.

Monday, June 6, 2005 10:48 AM CDT

Hello all.

Benny is doing well. He and Jeremia are enjoying their second week of summer camp. Benny has scans this week. Tuesday, Wednesday, and Thursday he will be visiting his old home away from home for his quarterly scans. I think he will only end up missing camp on Wednesday. Tuesday's is scheduled after camp is over and Thursday's is before camp. Today they are going to Tucson's children's museum. Jeremia has been before but not Benny. That is all that is happening so far this week. I will let you know about scan results when I know. I hope there won't be anything to tell!

Wednesday, June 1, 2005 4:30 PM CDT

Benny is doing fine. He is enjoying summer camp and has been feeling well.

I received some devastating news about one of our on-line friends, Jamie/Beebo has relapsed with Neuroblastoma. Please keep him and his family in your prayers/thoughts during this terrible time for them. As you all know there is no cure once you relapse with Neuroblastoma. Kelly, Beebo's Mom, is the creator of the warriors site, both Beebo's personal page and the warrior page addresses are listed below.
http://www.warriors.beebo.info/
http://www2.caringbridge.org/europe/beebo/

Please stop by and give them support.

Tuesday, May 31, 2005 10:50 AM CDT

Benny had a terrific birthday. It was stretched out over four days. For his actual birthday we ended up going to Chuckee Cheese. He received packages in the mail all week. Nothing is more fun than getting packages in the mail even as an adult I get excited about packages even when I am expecting them or already know what is inside. Jeremia and Benny both get so excited when a package arrives and can't wait to tear it open. It is so much fun to watch. Sunday we went for a BBQ and swimming with Kristy and Wil. We all had a ton of fun. Benny got everything he wanted except for the remote control giraffe. If anyone knows where to get one of those let me know. I have already checked every place I can think of and have done multiple on-line searches. Today is the first day of summer camp for Jeremia and Benny. They were really excited, but when we got there this morning they were both a little hesitant. I hung around for about an hour until they felt comfortable and then gave hugs and kisses and told them I love them which utterly humiliated Jeremia. Apparently being loved by your mother is embarrassing :) I hope I haven't scarred him for life. Scans next week, fun, fun, fun, and then the great fun of waiting for results.

TTFN

Wednesday, May 24, 2005 10:53 PM CDT

Benny is doing well, but he seems extra tired, not sure why. To be honest it does have me a little concerned. He had a echocardiogram today-I think that is what it's called. He has scans June 7, 8 and 9, which naturally runs directly through one of his weeks at summer camp, but luckily he has 6 weeks worth of day camp so giving up 3 days shouldn't be too tough. That's all for now. Two days to the big 4th birthday! :)

Sunday, May 22, 2005 8:39 PM CDT

This is the latest picture from one of Benny's photo shoots.

I cannot believe it has been so long since my last update. Benny is doing very well. I have been super busy. Both Jeremia and Benny will be going to two different summer day camps. One is through the American Cancer Society and the other is through Tu Ni Dito. They should have a ton of fun at both. We are getting ready for Benny to turn the big 4. I am so incredibly grateful. There were many times that I questioned whether he would make it to his fourth birthday. We have had a lot of visitors lately and have been keeping super busy. Next week is Jeremia's last week at school. He is happy that school is over. I just wanted to do a quick update and let you all know everything is great and apologize for not updating sooner.

Thank you to everyone who has been signing Benny's guestbook with all of the birthday wishes. He loves all of the cool pictures you have been posting.

Have a wonderful week.

Amy

Tuesday, May 10, 2005 10:37 PM CDT

This afternoon Benny came and asked me to take a picture of him. He led me outside and sat on his bike and said here Mama, take a picture now. Then I took a few shots and he said OK let me see. He looked and then said good let's go back inside now. He does this all of the time. He comes and gets me out of the blue on a regular basis requesting that his picture be taken. Those are the days he cooperates and looks at the camera for me. I love it when he does this. Everything has to be on his terms. I don't blame him. Anyway this is the resulting picture, and although he is still taking the Accutane his face looks much better than it did last week. I don't really know why it's better, but it is. We haven't done anything different than usual, maybe his face is adjusting, who knows.

All is well with everyone. Conrad stood on his own today. He is 8 months old now and has been pulling himself up for awhile but today he let go and stood on his own several times for about 30 seconds then would get so excited about his newest trick that he would try to clap in delight causing him to lose balance and fall back onto his butt. He is so much fun to be around, such a happy baby. He squeals with delight whenever Jeremia or Benny enter the room. He watches their every move and tries desperately to get their attention. Benny talks to him and plays with him and has named all of his toy babies "Baby Conrad". Jeremia would rather build stuff than play with the baby. He tries to play with him but gets bored quickly and goes back to whatever project he was working on before.

TTFN

Sunday, May 8, 2005 1:43 PM CDT

Benny is doing OK. He has a few things going on with him, but for the most part he is feeling pretty good. He has been back on Accutane for a little over a week. His skin is dry of course, his face is scaly and his lips are cracked. Yesterday we went to Jeremia's school carnival and the boys got snow cones Benny only ate a little of his snow cone because it was hurting his face and pieces of skin were getting stuck to the ice and pulling off all of the dead skin. I know it produces gross images but this is what really happens. I am not overly worried about the side effects that I can see, it's what I can't see that worries me, but it is a very important part of Benny's treatment. I just thought it was going to be a lot easier on him than it is. It is just like chemo in so many ways. I am trying to keep him hydrated with Pedialyte and water and Gatorade, but Benny only ever wants to drink chocolate milk. I have to bribe him that if he drinks a small cup of Pedialyte I will give him more chocolate milk.

The CT he had a few weeks ago to look into why he stumbles and trips so much found some sort of infection in his sinus cavity. He has to take antibiotics for 21 days and hopefully that will clear it up.

It has been a great Mother's Day so far. Derek made pancakes, eggs and bacon for breakfast. Jeremia gave me pink flip flops and flowers and a crocodile card. Benny gave me a new pink "purse wallet" and a pink shirt with a spongebob card. Derek gave me a CD I have been wanting. Derek said the boys picked out what to get me all by themselves. They were so very proud.

We went to Funtastics for the Tee Up For Tots thing they do annually. Benny loves goofy golf. The boys had a blast. I was reminded of last year when we were there it was when they had switched Benny's protocol, because his bone marrow was still showing positive for NB. I remember Benny had just finished the first round and we were waiting for his counts to drop but the Dr's said he was still ok enough to go to Funtastics that night. I was watching Benny and I remember being so afraid that he wasn't going to live to see another year. I just had this horrible feeling that he wouldn't make it to his fourth birthday. I stood there watching him playing on the bounce castle thinking to myself that I should soak up as much of seeing him happy and having fun as I could because I wouldn't have that much longer. There isn't a day that goes by that I don't look at him and think how glad I am to have him still here and then I am flooded with fear that I will lose him. I didn't mean for this update to take such a depressing turn, but it is what goes on in my head every single day without fail. In my soul there is a very delicate balance of fear and hope, some days it feels like the fear will take over, but most days I am able to keep it in check and hold tight to the hope. That is not to say that Benny isn't doing great. He is still NED and is showing no signs of relapse. We are eternally grateful for this fact, but fear and worry have become a permanent fixture in my mind. Contrary to what you may be thinking I am not having a bad day nor do I need a pep talk telling me to never give up hope and look how good he's doing now and be thankful and happy for how far he has come. Nobody is more aware of those facts than me, but that doesn't stop the constant fear and unfortunately I don't think anything will.

Well now that I have dumped that off of my shoulders I feel a little lighter. I am going to go spend the rest of the day being waited on hand and foot. Hehe.

Amy

Thursday, May 5, 2005 9:11 PM CDT

~~~ The Story of the Little Grape Stem ~~~

Once upon a time there was a little grape stem. This
stem was so glad to be alive ...She drank water and
minerals from the soil and grew and grew She was young
and strong and could manage quite well ... All by Herself

But then, the Wind was cruel, the rain was harsh, the
snow was not one bit understanding, and the little grape
stem suffered She drooped, weak and suffering.

It would be so easy to stop trying to grow, to stop
trying to live. And the grape stem was poor! The winter
was long, and the stem was weary.

But then the little grape stem heard a voice. It was
another grape stem calling out to her ... "Here, reach
out ... hang on to me." But the stem hesitated.
"What would this mean?" she thought For you see, the
little stem had always managed quite well, ... All by
herself.

But then, every so cautiously, she reached out towards
the other grape stem. "See, I can help you" it said.
"Just wind your tendrils about me and I will help you
lift your head." And the little stem trusted ...and
suddenly she could stand straight again.

The wind came ... and the rain ... and the snow, But
when it came, the little grape stem was clinging to
many other stems. And although the stems were swayed
by the wind ... and frozen by the snow, They stood
strongly united to each other. And in their untired
strength ... they could smile and grow.

And then, one day the little stem looked down and saw
a tiny stem, swaying, frightened. And our little grape
stem said, "Here, hang on ... I will help you." And
the other stem reached up to our grape stem... And
together all the stems grew ... Leaves budded ...
flowers bloomed ... And finally, grapes formed
And the grapes fed many.
--Author Unknown

Wednesday, May 4, 2005 9:09 AM CDT

I recently read a journal entry a mother wrote about watching your child go through cancer treatment. I have cut and pasted it here. The website I found it at is http://www3.caringbridge.org/wi/ashley

Whether you believe in God or are struggling what to believe, this is a very thoughtfully written, well put statement about what it is like to watch your child suffer so much, fighting the beast, while you sit on the side lines doing everything you possibly can, but always feeling like you are coming up short and wishing that you could swoop in and make everything OK.

So here it is as written by Robin, Ashley's Mom-

What its like to have a child with cancer

Picture your child sitting in the middle of the street
Picture yourself in your home watching your child
From the window.
Everything inside you wants to reach out and save them
But you can't get out, all you can do is watch and pray that
God is watching over them
You see them fall and cry for you to make it all better
But you can't get to them, they can see you and see your tears
And maybe hear your voice through all their tears.
You pray God will keep them safe.
You hear a car in the distance, but never know how far away it is, some days it seems really close other days even closer.
You know that at an moment that car may come and change your world all over again, in a split second you can be back to were you were when this all started or worse yet, the fight may be over.
Some days you start to feel a little more “safe” and back up from that window, walk over to the couch and sit down, when just then you hear that car again and in a second you are one with that window again, all those fears you tried so hard to put aside are back, more intense this time, feeling guilty for having let your guard down. It makes leaving that window the next time that much harder. We want to keep them close at all times for fear of the unthinkable.
At night when you leave their side to go to bed, you take one more quick peek at them to make sure all is well. You lay in your bed hoping to see them tomorrow, not wanting that day to end, for as hard as it was that day they are here with you, and tomorrow is filled with the unknown, every day, night after night these are our fears. We are exhausted in every way. Our prayers from one night would fill God’s book a million times over.
All you can do is pray to God to spare them, let them be safe.
From that window you see the fear in their eyes, their hopes of the future, such a small child sitting their all alone, surrounded by love, but alone ,fighting so hard, not wanting to let you down, for they are very smart, they know our sorrows.
Seeing your child sit there ,wanting to help with all your might,
But knowing in the end its them and their bodies that must do all the work, so much to ask of such a little person.
You'd never let your child sit there in the street, knowing that they could be taken from you at any moment, you would not just sit there and stare at them and pray to God to save them, you'd pick them up, wrap your arms around them and hold them forever, keeping them safe.
Yet that is what us parents of children with cancer are asked to do every day. Let them sit there and watch and wait and pray, pray hard.
Yes, I believe in God, but that doesn't stop my mother instincts to want to do something to help them.
How do we put everything we learned as parents aside, and simply hand it all over to God? How is it decided which child shall live and which child will pass on? Why is it that some children struggle so very hard and win their battle only to have it return with much more vengeance? Why do some children sail right through their treatment and then die suddenly? How are we to make sense of any of this? With each clinic appt. brings the possibility of a relapse, no matter how great they look or how wonderful they feel. If only we could judge their health by the way they look on the outside.
We are supposed to protect them, to keep them safe from harm, who said cancer could make all the calls? I never agreed to that, I am their mother and I will fight for them, with every ounce of my being.
Cancer may be calling the shots, but it will not win this game, not with my children, not with any of our children, we are so very weak, but so very strong, this bravery we have we get from our children, our little heroes, fighting every day with all their might…
Pray for them…………

Friday, April 29, 2005 6:09 PM CDT

I am happy to report that there is nothing to report. :)
Benny is feeling good. He just stared his second round of Accutane yesterday. We should start to see the effects of it sometime next week. I hope it is not as bad as last time, but experience tells me this time will probably be worse. Let's hope I am wrong.

We are all enjoying the beautiful weather and while we enjoyed our vacation last week we are very happy to be back.

In case you haven't looked, I did update the photo album.

Have a great weekend everyone.

Love,
Amy

Saturday, April 23, 2005 11:53 PM

Hello!

We went to Scottsdale for the K-9 trials as scheduled. Benny felt like complete crap. He spent most of the time sleeping, but the little bit that he was awake he said he was having fun. He is such a sweetheart. The dog show was really neat. The boys looked so cute in their outfits that Tim put together for them. They have two suits each, with official badges and everything. I will be posting pictures very soon! Alex's Lemonade Stand raised over $1,400.00 WOW!

Thanks so much Tim!

Sunday afternoon the day before we were supposed to catch our flight to California I called the hospital and spoke to Dr. Hutter (one of Benny's Oncologist's) to discuss what might be wrong with Benny because it clearly was not the flu. He had it for a week and was getting worse. It was very similar to the after effects of chemo. Dr. Hutter said to come back to Tucson and that we would have to postpone our vacation. Sunday night we drove back to Tucson and Monday morning Benny went into clinic to get fluids and to be evaluated. Dr. Katsanis checked him out and said that he was just dehydrated and that after some fluids we should be able to go on vacation after all. He said to expect this reaction from Benny after every round of Accutane. After re hydration Benny perked right up and we hauled butt back to Phoenix, to catch our flight to California. We made it just as they were boarding-how's that for timing?! We had a blast and took lots of pictures that I will be posting as soon as I get the chance. We got home late last night and spent all day today recovering from vacation. I just sat down in front of the computer to start weeding through hundreds of e-mails, but I thought I should update the journal first. Going on vacation is a lot of work.

Benny is feeling perfect now, thankfully!

Many thanks to Nanny for putting us up while we were in Phoenix. Thanks to Grandma and Grandpa for our lovely new dining room table-handcrafted by Grandpa himself.
And thanks again to Tim-such a wonderful, thoughtful, and caring man! Thanks to Kristy and Wil for sharing a wonderful vacation with us and helping us so much with the kids. It is always so much fun to be around you! We love you two so much!

TTFN

Friday, April 15, 2005 6:30 PM CDT

Still no word on scans.

Benny is still sick. We are going to Scottsdale with the hope that Benny will be feeling better tomorrow, if he is not then we will cross that bridge when we get there. Since his immune system has taken such a beating from all of the chemo it takes him longer to shake things off than it does someone with a normal immune system.

Pray that he is better in time to enjoy Disneyland!

TTFN

Amy

Thursday, April 14, 2005 10:47 AM CDT

Haven't gotten any news about the CT scan on Tuesday. I am hoping no news is good news.

We are preparing for our trip. We leave tomorrow night for Scottsdale for the k-9 show. The only problem is that Benny and Conrad both have the stomach flu. I hope they are better by tomorrow and that no one else gets it. Tim has gone to so much work and effort for the event and we have been looking forward to it for so long that there is no way we can miss it. Also we fly out from Phoenix to California on Monday. Benny wants pink Mickey Mouse ears. Right now I am just holding my breath hoping that both Benny and Conrad get well quickly and that Jeremia, Derek and I manage to steer clear of the yuckiness.

I will try to update tomorrow if anything changes. Otherwise I won't be updating until Saturday the 23 at the earliest.

Amy

Thursday, April 7, 2005 11:09 pm

Benny's clinic appointment was this afternoon. Everyone was happy to see him and he loves going back to that particular clinic because it is so familiar. He has been going there at least once a week for over a year. The only exceptions being transplant and radiation where he went to different clinics. They are so welcoming there. It is like a family reunion every time you go. They all had to feel Benny's head because the new hair is SO soft, and of course he is adorable. No one could believe that Conrad is already 7 months old seeing as how we had only found out I was pregnant two weeks before Benny was diagnosed.

We were given clearance to go on vacation and for Jeremia to FINALLY get a turtle(SSSHHHHH don't tell him, it's going to be a surprise) we just have to be very careful and make sure the boys wash their hands every time they touch the turtle because they have salmonella, but Dr. Bagatelle said she couldn't bare to say no when she knows Jeremia is just dying to have one and she said even though he isn't the one who was sick she knows that this has all been very hard on him. That is a fact!

Benny will have to go to clinic every four to six weeks while on Accutane for blood work-hello needles, ouch. She said she wants to keep us on a short leash. I am all for that.

She ordered a head CT for Benny. He will be getting that done Tuesday of next week because he has horrible balance and falls all of the time, like a toddler, and he's almost four. I said I thought it might be his inner ear since he has had ear problems in the past and chemo effects the ears. She agrees that is a possibility, but would rather be safe than sorry. That is just one of the reasons I am so thankful she is Benny's Dr. She has been awesome and we love her.

Benny is already talking about his birthday and what he wants to do for it. He wants to go goofy golfing, and Jeremia whose birthday isn't until August wants to go to Chuckee Cheese's.

Jeremia was talking about monster trucks and how he was going to get one when he grows up, and Benny told him he couldn't get one because they don't sell monster trucks. Jeremia said yes they do then Benny said no Jeremia still couldn't get one because then he would run over other cars, to which Jeremia said so what. Benny then said you can't get a monster truck because I don't want anyone to get hurt. Jeremia said well I am getting one and then Benny said yeah me too. So now both of them are going to get Spiderman Monster Trucks that shoot fire and Benny's is going to have big wheels and wings. Their conversations are priceless, especially in the car when they think no one is listening. I am going to gobble them up.

TTFN

Monday April 4, 2005 11:58 pm

Benny's poor little skin is drying out terribly from the Accutane. His face has become flaky, his legs and arms are visibly dry, his eyes are red and raw from lack of moisture. He is going to have to be extra careful for awhile because his skin breaks a lot easier now that it is so dry, so what would have caused a minor scuff or scratch before will now cause big splits or cuts in his skin. Keeping Benny from getting scaped up will be a challenge. I put hand cream on his body and face several times a day. I use hand cream because it has more oil than other lotions. I think that I am going to have to rub him down with baby oil every day though, because the lotion isn't sufficient.
He has become moodier and quick to cry, also because of the Accutane.

He has clinic on Thursday where we can ask Dr. Bagatelle if there is anything I can do that I haven't thought of to help his skin retain some moisture.

I don't know why, but now that his hair is growing back he is starting to look smaller and frailer to me than he did with a shiny bald head. I thought it was just me, but Derek said he noticed it too. I will ask the Dr. about this also so we can be sure it is just an optical illusion and not actually true.

Benny will be turning 4 next month. He has such an old soul and has been through so much it seems like he is much older.

Well that is it for now. I will update on Thursday if there is anything of interest to report.

Amy

Friday, April 1, 2005 11:42 AM CST

Benny finished his radiation and has started his first round of Accutane. He takes it for two weeks and then rests two weeks and so on. He will be taking it for quite awhile. He is doing great. We are really getting excited about the Desert Dog Trials. I think it will be a lot of fun! There really isn't anything to report, thankfully things are nice and calm and we would like to keep it that way forever!

Have a great weekend everyone and Happy April Fool's Day!

Amy

Monday, March 28, 2005 1:34 PM CST

Things here are good. Benny has three days left of radiation and then he is done. He is feeling worn down, but good. He tires a little more easily than normal, but that is the only sign I see of side effects. Easter was good. The boys had fun and got cool stuff from the bunny.
Conrad is learning to crawl and now has two pearly whites. Jeremia is doing well. He has turned into quite the practical joker. He is always doing little quirky things just to see if you are paying attention. Like we were at the store the other day and he found one of those air freshener scented tree things in the cart. About an hour later I reached in my pocket and felt something different. He slipped the tree into my pocket some time while we were shopping and patiently waited until I noticed and then cracked up when I pulled it out of my pocket, smiled and looked at him. There was no question how it got there. I knew he did it, but I never felt him put it there. He is doing stuff like that all of the time. Like yesterday when the eggs were boiled and ready to go back into the carton to be colored, I was looking for the empty carton but couldn't find it. I finally checked the fridge. Jeremia had taken the empty carton, filled it with a dozen of his plastic Easter eggs and closed it and put it back in the fridge and then went about his business until I found it. When I asked him about it he smiled a toothy grin and asked if I liked the eggs. He is definitely a self entertainer.

Hope everyone had a great Easter.

TTFN

Thursday, March 24, 2005 8:54 PM CST

The procedure was fast and went very well. Benny is now tubieless. He was shy to show me that his tubies were gone at first. In the middle of the day I just asked him where his tubies were and he went to lift his shirt and then thought for a second remembering that "hey I don't have tubies anymore". Then later in the day he ran up to Jeremia and yelled "Guess what? Look...NO MORE TUBIES" from that point on he has been proud of not having tubies and has gotten over the shyness. I don't think he knew what to think at first because he really can't remember not having them. They were just another part of his body as far as he was concerned.

He is still tolerating the radiation very well. He will be done with radiation and be starting Accutane next week.

Happy Easter!

Monday, March 21, 2005 6:11 PM CST

I was expecting more side effects than this for Benny. Sure they told me side effects would be mild, but I have yet to see a side effect. They said it would make him tired and possibly nauseous, but so far he is doing great. He goes everyday and lays perfectly still on the table while they take care of business. Always such a tough trooper. Derek has been the one taking him because Kara, our Nanny, was on spring break so I had to stay home with Conrad and Jeremia. Derek said waiting in the waiting room there are a bunch of depressed, mopey adults waiting for their turn and then there is happy Benny chatting away playing and just being a happy kid. No matter what he is doing in any given moment he is usually smiling and having way more fun than anyone else around. What a kid!

Wednesday, March 16, 2005 6:47 PM CST

So far Benny is handling radiation just fine. His tubies are scheduled to be removed the 24th instead of the 23rd and he will continue radiation until March 30th. There was some confusion about dates, but this is what we are being told now.

Sunday, March 13, 2005 8:11 PM CST

I don't think I mentioned it before, but there is a little girl named Cassandra from Gilbert, AZ. She has Neuroblastoma Stage III and went through transplant right about the same time as Benny. She sent a tape to ABC's Extreme Makeover requesting that they remodel the BMT clinic and ward because it was very drab and dreary. They did it and they also built the family a new home. The episode aired tonight on ABC and it didn't occur to me to mention it here until just now. Even if you missed the show tonight though, tomorrow night on ABC at 6 or 7 not sure which, they will be having a follow up called How'd
They Do That all about the show and the family.

Benny is doing fine and feeling good. He starts radiation tomorrow afternoon.

Thursday, March 10, 2005 10:09 PM CST

HIP HIP HOORAY! HIP HIP HOORAY! HIP HIP HOORAY!

Why am I cheering? Because I have wonderful, fantastic, super, terrific, phenomenal, stupendous, great, excellent, spectacular, awesome, sensational, marvelous, glorious, magnificent, amazing news!
Wait for it. Wait for it.....
.................................
..................................
...................................
....................................
.....................................
..............................
BENNY'S TUBIES ARE COMING OUT MARCH 23RD!!!!!!!!!!!!

Can you believe it? Finally! Yippee! Woo Hoo!
Can you tell I am excited? No more dressing changes. No more flushes. No more leaks. No more line infections. No more worrying about tubies dangling out of my 3 year old, just begging to get caught on something. Benny doesn't even remember what it is like not to have tubies. They are just another part of his body to him. When I told him they were coming out he didn't seem to care until I mentioned that the next time we go to the ocean he will actually be allowed to go in farther than his shins. Then when I mentioned no more dressing changes, then he was really happy!

Benny starts radiation on Monday at 2 and will be done the following week either the 22nd or the 23rd. Irregardless of when radiation ceases, Benny's tubies are scheduled to come out the 23rd! Almost exactly 14 months to the day they were put in.

LET THE CELEBRATION BEGIN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Tuesday, March 8, 2005 5:00 PM CST

Well I am happy to say that Benny had his tubie repaired without incident. He is also feeling better and managed to escape temporary residence at Hotel UMC. We did however manage to pass on the ickiness to Kara. She did not Nanny for them through the thick of the sickness, but still managed to come into contact with the cooties after we thought it was safe. Benny is still on antibiotics for whatever was growing in his tubies and we will be stopping at clinic tomorrow to get new blood draws.

I am annoyed to announce that I have not yet heard word about Benny's radiation schedule. I will be calling them first thing in the morning and hope to find answers.

Conrad, who is now six months old, is cutting his two bottom front teeth. How cute he is with the slight gleam of white in his gummy smile, but how sad I am that they all grow so fast without the slightest regard for taking their time, always in such a hurry.

Until I hear something about radiation things are relatively boring. When Benny went the week before last they told me he would be starting radiation this week and continuing it through the next two weeks. I just naturally assumed they meant Monday this week. I should have known better.

Sunday, March 6, 2005

For the love of Pete!!!!!!!!!!!!!!! I do not know what the deal is with Benny and his tubies, but now there is a hole in one. For those of you who don't remember, this is Benny's fourth set of tubies. His first tubies were pulled out accidentally, by yours truly, his second set of tubies were repaired twice because they sprung leaks then they were constantly causing infection so the doctors pulled them when they finally figured out that after countless hospitalizations from mystery illnesses/fevers that it was the tubes themselves that were growing bacteria. Benny's next tubie insertion was goofed up by the surgeon who only gave Benny a single tube instead of a double. Double lines are very important and a necessity when one is having Bone Marrow Transplants. Finally with his fourth set of tubies that he has been sporting for something like 5 months and is scheduled to get them out in a matter of weeks his lines get infected and we start Vanco, now tonight while I was disconecting him from the Vanco and flushing his lines I discover that his line has a pin hole in it and now poor Benny has to go to the hospital today and get it -hopefully- repaired. I will not let them place new lines again, with him so close to getting them pulled for good there is no point in him getting new ones. I don't think there will be a problem repairing it though, because it is a small hole and it is towards the end of the tube which is important when you are trying to repair a line. This is extremely simple compared to any number of things we have encountered since this all began. I just feel bad for the kid. I have actually read about kids who only have one line placed for their entire treatment and have had little to no problems. This is unfathomable to me considering what a source of trouble they have been to Ben. That said we are still very thankful that Benny was able to receive all of the medications and blood products and only had to be stuck a very few times through all of this, so in the long run the tubies have been well worth any hassle since they have saved Benny from any added torture, I guess I am just venting out of frustration. Whenever I start to get relaxed and let my guard down or pretend that we might be able to have some sense of normalcy I am brought back down and given a reality check.

On the subject of how Benny is feeling- he feels better for an hour or so and then he feels bad again. What's happening is, he feels better so he plays and then he wears himself out thus feels yucky again. I figure they will draw blood today when he gets his tubie repaired and we will see if he is still growing something or not.
I will let you know when I know.

Hope you are having a glorious weekend.
TTFN

Friday, March 4, 2005 12:39 AM CST

Derek took Benny to the hospital yesterday and they took blood, but I doubt anything will come of it. Benny is still feeling icky, but he doesn't have a fever anymore, which is good. Jeremia was sent home early from school yesterday. We kept him home today, but he is feeling just fine now. Conrad had a small upset tummy yesterday, but like Jeremia is fine today. I am feeling better and Derek as usual escaped whatever we all had/have.

When I mentioned Benny getting tattooed, it struck me as funny how everyone reacted. The most common question was "what do you mean tattoo? What's a tattoo?" as if to suggest that there is another meaning for the word. After I explained it is exactly that, a tattoo, not even a fun one just a couple of polka dots, the next reaction was shock that they would do that to the poor baby. The thing that I want to point out is that of all of the things Benny has been through in the past year, this is probably the least traumatic and certainly the only thing that doesn't have scary side effects. I guess a tattoo is something that no one had ever considered should/could be used in the same sentence as 3 year old. The thought is shocking, but to me it is a lot less shocking than any of the other things Benny has had the misfortune of encountering through treatment. In a million lifetimes I don't think I could comprehend everything his little body has been put through. He has been pushed so close to death so many times in such a short time and still manages to smile, laugh, play, and love without holding grudges harboring hate or anger and not one ounce of self pity. He has such strength, and will. He is miraculous and a pure joy to be around.

*UPDATE

March 4, 2005 5:00
Dr. Hutter (the head peds oncologist at UMC) just called and said that Benny's culture is growing. We were not expecting this. A month ago this would have meant a direct admit and at least a week in the hospital, but we can stay home as long as Benny does not get a fever of 102 or more, and as long as he doesn't get worse. Home health delivered Vanco for me to give Benny every 12 hours. Benny is worn out and feels crummy. He is still periodically feeling nauseous/throwing up and has diahrea and he says his right ear hurts. I think he got whatever the rest of us had, but since his immune system is still on the weak side from transplant his body is having a much harder time fighting it off. Keep your fingers crossed that he won't be having any sleepovers at the hospital.
I will update if anything changes.

Thursday, March 3, 2005 12:48 AM CST

As some of you may remember Benny is a bit of a celebrity with some of the people at UMC. He has had his picture taken many times and actually appears in a commercial for UMC. They use his picture at fundraiser's and such. Yesterday I got a call from Dr. Bagatell saying that Benny was being requested to appear in a fundraising video. I have been sick all week and I was feeling my worst yesterday, but Benny had been feeling fine so I said no problem we would be glad to help. We agreed to be at the hospital at 2 today for filming. Poor Benny started throwing up last night. He woke up this morning complaining of his tummy still hurting, being cold and he has a low grade fever. Needless to say he won't be able to do the video today, but we will be going to the hospital to get him checked out. I will update later if we find anything out.

TTFN

Friday, February 25, 2005 8:30PM CST

Benny went yesterday and got his CT that they are going to use to plot his exact radiation area. He got two small polka dot tattoos. Benny did a magnificent job of holding perfectly still on the CT table for about 20 minutes with his arms stretched out over his head wearing nothing but his underwear and a towel banded around his feet binding them together. He was nervous and wasn't enjoying himself in the least but he held perfectly still and even allowed me to go behind the barrier while the machine was running and then the nurse came at him with a sharpie marker to put marks on his belly and my feisty three year old managed to unbind his feet and kicked her. He will sit there half naked, scared, with a noisy scary machine over him while the table he is laying on moves him back and forth through the donut hole but you better not get anywhere near him with a marker that you intend to draw on him with. Luckily the Radiation Oncologist is phenomenally patient and excellent with kids. Benny's moving meant we had to start from square one. It took me about 20 minutes to calm Benny back down and the Doctor was kind enough to round up some chocolates, Benny's favorite, and Benny sat there with tears in his eyes, and chocolate in his mouth while I promised to take him to the store to buy him anything he wanted if he calmed down and let them start over and, yes, draw on him. We gave him the marker and he drew all over the nurses arm, but was still not impressed. They gowned me up in the lead dress and I stayed with Benny holding his hand this time as he lay on the table with his little heart palpating and his eyes squeezed shut. I talked to him while they redid the scan and then a Dr. came in and gave me the marker to mark where they needed me to and then they scanned some more and then I had to warn Benny that now they were going to have to poke him. He didn't even have time to process the words before they were already sticking him. He was Pissed! He screamed at all of us "You made me mad". Then he said he wanted me to hold him and they said it was OK because he was done! My tough, tough little man! He makes me so very proud! What three year old is able to lay there motionless for an hour? He puts up with so much and asks for so little. So we went to Target and Benny's bribes are getting a little more expensive, but are still very do-able. This time he chose a shiny red drum. Yes, that's right a drum. Feel free to mail us ear plugs! Along with the drum came a tambourine, harmonica and maracas -aka-rockas-Bennyspeak. With the keyboard, guitar, and now drum and other musical instruments we have ourselves a little rock band, now all they need is lessons.

Monday, February 21, 2005 2:17 pm

Today was the day we met with the radiology/oncology doctors. Benny gets a CT on Thursday. They will be comparing that CT with the very first one they took when Benny was first diagnosed to determine how much of the original tumor area should receive radiation. He will then get tattooed with pin point tattoos to mark the area. His actual radiation is only going to be about two weeks long, so the entire process will take just over 3 weeks and then TUBIE REMOVAL!

In other very special news! Benny and Jeremia have been chosen to be Honorary Junior K-9 Handlers at the K-9 Desert Dog Trials in Scottsdale on April 16th and 17th. There will be an Alex's Lemonade stand there and they are in need of volunteers so if you are interested in helping a very worthy cause that raises money for Neuroblastoma research as well as other childhood cancer research, let me know and I will put you in touch with Tim, the man who has so kindly put this all together. We are very excited about this opportunity to get the word out about Neuroblastoma. There will be news coverage so maybe Jeremia and Benny will get to be on TV too. How exciting! Please volunteer if you can!

I have listed two important links below to give you a little more information on what will be going on and tell you more about Alex's Lemonade stand.

This site has information about the K-9 trials
http://www.scottsdaleaz.gov/lawenforcement/k9/desertdog05.asp

This link has a tribute to Benny and links to Alex's Site
http://www.desertdogk9trials.com


Check out the new pictures...

Friday, February 18, 2005 12:42 PM CST

Wow! I was blown away by the amount of people who have asked me to reconsider, so I guess I will keep updating on Benny's page. This is where I prefer to do it anyway. Sorry for the indecisiveness.

Happy, day late, birthday to Keegan. The big 12. One more year until you are officially a teenager! I hope you got your package, and had a terrific day!

Good news. Benny's CT scan he had on Monday is clear. We are still waiting results from the more in depth MIBG scan, but we are pretty confident that it will also be clear.

Benny had a hearing evaluation on Wednesday. They had to vacuum out his ears first because he had impacted ear wax. I didn't even know you could get your ears vacuumed. Anyway he sat so still and was so good. They said they have never seen anyone young or old behave so well during the procedure. After they finally got his ears cleaned out, they sent sound into his ears with a special ear plug that measures in some mysterious way how much hearing if any they have lost. Benny has lost some high frequency hearing, but not enough to effect his speech or anything like that. He will not need hearing aids. Some children lose all of their hearing from the high dose chemo.

We meet with the Radiology Dr. on Monday. Dr. Bagatell says that she doesn't think that this phase of treatment will even take a month, but that is for the radiology doc to decide for sure. She wants me to let her know what he says on Monday so she can schedule.................


.....................drum roll please ...............

............................................................


...............Benny's tubies to be REMOVED!!!!!!!!!!!

If I could do cartwheels I would be doing them right now!!!!

Wednesday, February 16, 2005 5:37 pm

I am sorry it has come to this, but I will no longer be updating on Benny's page. If you would like to be added to a list to have updates e-mailed to you let me know and I will be happy to keep you all updated that way.

Sincerely,

Amy Petz

Saturday, February 12, 2005 8:36 PM CST

Despite some recent attention seeking actions on the part of some very miserable self serving people who are doing there best to wreak havoc and spread lies, we are doing very well. I would like to apologize to those of you who have signed Benny's guestbook and have received unsolicited vicious e-mails. I have debated on whether or not to shut down Benny's site because of these recent events, but for the time being have decided to keep it up. There are so many terrific people who check on Benny and without this page they would have no way of knowing how Benny is doing. Why should I make everyone suffer simply because of someone else's careless actions? If anyone should have ANY issue with me then they should send me an e-mail themselves, my address is listed towards the bottom of this page. I would appreciate it if the passive aggressive, narcissistic actions would cease, and if you have a problem with that have the courage to address me, not take it out on Benny or the wonderful caring people who check in on him.

Now then, that said let's move on to the good stuff. Benny, my oh so big boy, is now potty trained. That's right you read correctly, he is officially a big boy underwear wearing, super stud. After lots of attempts of reasoning with him and explaining the importance of not wearing diapers and being a big boy didn't work, I finally resorted to simple bribery. It worked. I told him if he started going potty on the toilet ALL of the time, not just when it fit into his ever so busy three year old schedule of watching TV, playing, eating snacks, reading books, playing gameboy, and so on, that I would take him to the store and he could pick out ANY toy he wanted. When he heard this he was simply delighted and exclaimed he wanted a rubber ducky and a rubber froggie. I laughed and said whatever his little heart desired. It won't be long until that same statement will be answered with much more expensive requests, but for now Benny has very simple three year old wants. He is extremely easy to please. After one day full of accidents, but earnest effort we went to the store to get Benny his very own training underpants and some rubber duckies and froggies. He has only had one accident in the three days since.
Today we went to the zoo and he exclaimed with a slight amount of panic in his eyes that he had to go potty. Luckily our zoo is not very big so we raced to the restroom and he made it. He is so very proud and of course we are bursting with pride. Now we are down to one diapered butt in the house again, but sadly I don't think Conrad who is all of five months old will be ready for potty training for quite some time. Derek and I have been changing diapers for over five years straight now, and I don't think there is an end anywhere in site. :)

Next week is full of scans FINALLY. A key player in the HEM/ONC team decided to make a career change with no notice and I don't think anyone really new just exactly how much the one person took care of, so now they are all scrambling and trying to fill in this massive gap and that is why it took so damn long to get scheduled for scans. I finally had to throw a mini temper tantrum, but here Benny is almost a month out of BMT and we were needlessly sitting in limbo when we needed to be taking care of business, so finally things are moving forward again. Monday the 21st is when we meet with the Radiology Oncology Doc and will hopefully be given a time table and lots of info on what to expect. As always I will let you all know when I know.

Hope everyone is having a great weekend. TTFN

Amy

Sunday, February 6, 2005 4:14 AM CST

Due to popular demand the overdue update is finally here.

Benny is doing good. With the exception of a mild bug that Benny, and I had and Conrad is now getting over. Just some sore throats and runny noses. A cake walk compared to anything Benny has faced in his short little life.

Clinic went well. It was pretty uneventful. We met with his main Oncologist Dr. Bagatell and she told us she would make some calls and we would be hearing from someone with appointments for his latest round of scans and to finally meet with the radiologist Doctor. He will be starting Retinoic Acid (AKA Accutane-a "mop up" drug used to kill any random "invisible cancer cells still floating around Benny's body) within the next two weeks or so. They want to check the scans first to make sure the cancer is still gone. Then we discussed when Benny's tubies will be removed. I was told that it was up to us, but her recommendation was to leave them in at least until radiation was done, because he will need lots of transfusions during that time. I have heard of families leaving central lines in for up to a year after treatment is done in case relapse occurs, but as Dr. Bagatell so aptly stated, "If Benny were to relapse, central line placement would be the least of our worries." We want Benny to be able to be a normal tubeless person as soon as possible and for as long as possible, preferably until he is 80 something, because of this we say pull the damn tubes as soon as radiation is done and then every four months he will get a normal IV for scans. I will take three rounds of quick tears over IV insertion a year in order for him to be able to finally go for a swim or frolic without worry of a tubie getting pulled. That and he would really enjoy being able to take a bath without having to worry about getting his dressing changed, and as for me it would be nice if after over a year of flushing lines and hooking him up to all sorts of medicinal concoctions, I could hang up my nursing cap. I no longer aspire to be as nurse, I am perfectly happy just being a Mom.

Monday, January 31, 2005 4:35

We had a terrific weekend. We took a three hour drive to see my Grandparents in Tonapah, and visited with them and my Dad and Ellie for a while. It was nice. We hadn't seen my Grandparents in over a year and we had missed them terribly. Then we stopped in Phoenix and visited with my Grams Dory, Smokey, Aunt Sandy and Dusty. After that we stopped and had a brief visit with my best friend Katie, her beau Graham and her Dad and Billie. It was a full and happy day filled with a lot of faces that we love and have been missing for quite some time. The boys had a blast and collected eggs on my grandparents farm and ran around and wore themselves out. They didn't complain in the car thanks to the DVD in the van. They were fully entertained by Spongebob, Mary Poppins, and Scoobie Doo. It would not have been as quiet in the car without modern technology :)

We have clinic on Thursday.

TTFN

Thursday, January 27, 2005 4:42 pm

I know it has been too long since I updated. We have been pretty busy, the good kind of busy. The boys Nanny, Kara, started last Saturday and they love her. She is great with them. She is a Sophomore at U of A and is on her way to becoming a 2nd grade teacher. Jeremia keeps trying to think of things for me to do, to get me out of the house so Kara can come over. She came and watched Benjamin and Conrad today so I could go spend time with Jeremia at school. When school was over Jeremia told me to go get my nails painted so he could spend time with Kara.

Kathi, Carol and Jeff came to visit on Sunday and brought more things for the boys. They have been terrific through this entire past year, always here and always ready to help. Thanks guys!

Benny has been feeling great. His hair is growing back again, just so it can fall out when he starts radiation, but he is excited that it's growing anyway.

Things are going well and we are enjoying every second of it. We have a lot of plans for the up coming months and hope to do a lot of fun things, including day trips to local sites, T-ball, summer camp, a vacation, and anything else that tickles our fancy, after all we have earned it.

I am sure there are some of you wondering what happened to Keegan. Keegan is fine. He has decided he wants to live with his Step Grandfather for a while. We miss him, but just want him to be happy and this is what he wants for now.

Well, that's all for now. We will be going to clinic next week and I will be updating then. Have a great weekend everyone.

Love.

Friday, January 21, 2005 4:09 pm

It's official! Yesterday was Benny's last day in BMT clinic. He is officially done with the Bone Marrow Transplant experience. He still has to go to clinic, but now it will be the regular HEM/ONC clinic like he was going to before transplant started 5 months ago. This is a big milestone. They celebrated Benny's completion by presenting him with a Batman cake and lots of congratulations. As with everything it was bittersweet. We are ecstatic to be going back to our old friends at the other clinic, but sad to be leaving our BMT friends. We will just have to go and visit them often.
Derek and I have decided not to have Benny participate in the antibody study in New York. It was a very difficult decision to make, but we are satisfied that we made the right choice for Benny and our family.

Tuesday, January 18, 2005 1:44 pm

Can anyone tell me what you were doing on this exact date last year?

I can tell you exactly what we were doing. This time last year we were preparing to say good-bye to some friends who had stayed over for the weekend. They were getting ready to go home and our weekend was winding down. This date last year was a Sunday. We were just lounging around talking and they were working up the motivation for the drive home. What we didn't know then was how important this day would come to be. How devastating, life changing, terrifying the day would end up. After our friends went home Derek the boys and I went out to dinner at Chili's. When we got home I took a shower and was getting dressed when I saw Benny leaning on my desk chair looking ever so adorable so I stopped what I was doing walked over to him and tickled his tummy.....it felt strange. It was too hard. I didn't trust what I was feeling so I asked Derek to come and check. Derek felt it too. I immediately called the Dr. and after rushing around gather stuff and finishing getting dressed we headed for the emergency room, it was 8pm. When we got to the hospital I started doubting myself. Telling myself that it was nothing that we were wasting our time. They were going to take one look at Benny and tell me to relax and give me some calming explanation and send us home. As you all know, that did not happen. They examined Benny and almost immediately put us in a private room. They came in and did various things and said Benny needed to have a scan. Looking back I notice how hard they tried to avoid eye contact or allowing the opportunity for questions...they knew it wasn't good, and no one wanted to be the unfortunate soul who had to bring our world crashing down on top of us. This whole week will be a week of "anniversaries" Tomorrow is the anniversary of Benny's biopsy. Friday will be the anniversary of when he was rushed to Pediatric ICU and we thought we were going to lose him. We called family to come and luckily by the time they all got here Benny was doing better. And then finally Saturday the 22nd will be the biggest anniversary that day he was transferred by ambulance to UMC and we were told exactly what we were up against. A year seemed like a lifetime away then. I naively thought all we have to do is make it through a year of this and then we can go back to "normal." It is almost laughable to think how naive I was back then, a year yet a lifetime. We have been through so much more than I ever thought we could handle. For us Benny having cancer, and always having to be at the hospital IS normal. This past year was to date the hardest thing any of us have had to go through. Benny has suffered through so much in such a short lifetime. We have been through hell and back. We have lost a lot in this past year. We have been brought down to size. We have learned the pain of indifference, but also been the lucky recipients of random acts of kindness. We have found love and understanding from so many so called "strangers." Derek and I have grown closer than we thought possible. This past year while filled with enormous heartbreak, letdowns, terrifying experiences, devastation, pain, suffering, indifference, tears, stress, worry, and so many more negative things, it has also been filled with an enormous amount of love, hope, courage, strength, and kindness. I choose to focus on the last five, for they are more powerful than any of the negative things! We have made it through a year and still have more ahead, but we are thankful to have come this far and ready for what will hopefully be a much better year ahead.

Friday, January 14, 2005 2:40 am

There are a lot of children's sites I check in on regularly. I get something different from each site. Whether it is the Mother, Father, Grandfather, Aunt, Baby-sitter, next door neighbor, the person who is ill, or any other person you could imagine that does the journal updates they all have a voice and I like to hear their different points of view and read about their experiences with this miserable disease or similarly devastating diseases. The following is a journal update from one of my favorites. The journal writer has an awesome ability to put a fun spin on the day to day stuff involved in fighting cancer. He is very good at making me laugh and cry in the same paragraph. I am often moved by his post's about his son's battle with cancer and life in general and wonder how many people get the pleasure of reading his ramblings. While this post is more serious than most of his others it rings so very true and I had an ahhh haaa moment regarding the statement we hear so often- "I just don't know how you do it", to which I usually respond, "Like we were given a choice"?, but Steve points out that we do indeed have a choice, it is one that I remember Derek and I made together in the beginning of this battle, but it didn't really seem like a choice at the time at least not a choice that was dwelled on. I am not sure we even discussed it. We just both knew, I guess. Steve has a wonderful way of pointing out overlooked and yet seemingly obvious things. Thanks Steve!
Anyway here it is,



"Regularly scheduled programming from Team Spencer is unavailable. We are
pleased to bring you this encore presentation from Oct 2002:



By now you are used to the familiar style. Deep sense of drama that sucks
you along for a page and a bit followed by a quirky twist that tickles the
funny bone. This isn't one of those, and if that is what you are hoping
for, you are likely to be disappointed. Of course there is no way you are
going to believe me here at the beginning. You've been fooled before.
Fair warning. I had to advise you of the risk before we begin. It's your
choice whether or not you care to read on.



Informed consent. It's the foundation of all the non-emergency treatment
and diagnostic procedures that they do at the hospital. Whether it was
created as the outcome of some enlightened medical care philosophy or it was
thrust into the healthcare realm by an overly zealous legal system doesn't
really matter. Inherently, you have the right to choose. Nobody can do
anything to your child without your OK. The decisions belong to you.



So how does it all start for the typical cancer family? Some hideous
sequence of events brings you to Children's hospital. The first things
they need to do are tests. Lots and lots of tests. Yes we would like to
do an ultrasound, x-ray, CT scan, bone scan, more blood tests, and an MIBG
to accurately diagnose and stage your child's disease. Yes you get to
choose whether or not to subject your child.



Inevitably follows some definitive diagnosis and a treatment protocol. The
reams of chemotherapeutic agents all have side effects. This one causes
baldness, that one causes high frequency hearing loss, this one can affect the
kidneys, that one can affect the heart, nausea is a common side effect, etc..
etc. You listen with a sense of bewilderment and some amusement. You
have a choice but don't even bother to ask about the alternative. You
already knew the first time you heard them say the word cancer.



Depending on what you're up against, surgery might be part of the game. A
general anesthesia alone sounds like a bad risk. Once the surgeons fully
detail all the potential complications of what might happen when your kid's
particular tumor is removed, you sometimes wonder about the benefit of being
informed. It doesn't leave you with a sense of comfort, but at least you
have the choice.



Then there is the bone marrow or stem cell transplant. Now that meeting is
a happy one. Let's contemplate the potential major organ failures:
kidney, liver, lungs, bone marrow, and very occasionally, the heart. Oh
and of course there is some risk to the brain, but generally not unless the
other organs go first. Oh yes and of course there is infection. Your
options are bacterial, fungal and viral. They are all potentially lethal,
but we do our best. Strangely enough, they don't even mention hair loss
as an adverse side effect on this one. Remind me again of the options
please, I have a choice to make.






These are all the impossible choices. Not that it is impossible to choose
one way or the other. It just feels impossible to believe you are in the
situation to begin with. Impossible to believe that you might eventually
reach a point where you might want to consider option B.




But it's not all high-drama. Every day there are a bunch of informed
medical decisions to be made. Would he like this medicine in liquid form
or can he take a pill? Gravol now or should we wait and try to space it
between the ondansetron doses? Platelets are low today, but not real
low, we could hold off until tomorrow to transfuse if you can come back to
the clinic then? He's losing weight; we should consider an NG tube. And
on and on and on.



These are all the meaningless choices. Not meaningless in the sense that
they are unimportant. Do a good job on all the day-to-day stuff and it
can have a big impact in your child's comfort and your peace of mind. Make
all the wrong choices though, and it won't likely have any effect on the
final outcome. In that sense, they're all meaningless.



So of all the impossible and meaningless choices that you get to make, is
control just an illusion? Isn't it just one great train ride you are on
and at some point you pass a switch in the track that determines your final
destination?



That might be true. But there is one other choice you get to make that
does have a lot of meaning. It may or may not affect the destination, but
it certainly does affect the ride. It's not even an obvious choice because
nobody will ever present it to you. You don't have to sign the consent
form. You don't even have to announce your decision.



You get to choose how miserable you want to be.



OK. Life sucks. Your kid has cancer. But every day you get to choose if
you want to be pessimistic or optimistic. You get to choose whether you
want to be a victim or your kid's biggest champion. You get to choose if
you want to endure the day or have some fun and make the best of it whatever
it brings you. You get to choose what example you want to set for your kid.
And you get to choose whether you want to teach your kid that he has a
choice of whether or not to be miserable.



It's a choice that you actually get to make a dozen times a day in different
circumstances. And you don't always have to make the "happy" choice.
Sometimes it feels really good to just have a bad moment and tear the head
off the incompetent idiot who appears not to have the skills to issue your
parking pass.






Once you realize that you actually do have control over just about
everything in your life except perhaps the impossible choices and impossible
outcomes, it makes the journey a whole lot easier.



You might still be lumbering down the railroad, but if you believe you're
flying the space shuttle, you might actually have a better chance of
reaching escape velocity. And it's a whole lot more fun to eat astronaut
food.





For Seffi who made us realize there are other kinds of choices, important
and meaningful ones, and damned if we haven't had to make them..."




Here is Steve's son Spencer's website. Stop by and read some of his writing's. He is a very entertaining story teller.


http://www.caringbridge.org/canada/spencer/

and here is Seffi's son Dror's website, Seffi is an extremely informed and caring advocate for Dror and a former longtime member of the on-line Neuroblastoma support group I am a member of.

www.caringbridge.com/page/dror

Thursday, January 13, 2005 12:48 am

The new pup is simply marvelous. He is a sweetheart and so well behaved. The boys and I are madly in love with him!
Benny has clinic tomorrow for counts. He is feeling like a regular kid. He asked me tonight if I remember when he "used to be sick"? It broke and melted my heart at the same time. He has no idea he is still expected to go through more torture, that is what broke my heart. What melted it is just how damn cute he is! He is so lucky I can't eat him cuz I just want to gobble him up! I placed an ad in the U of A Wildcat for a part-time Nanny for the boys. Today was the first day of classes after Christmas break. I have already received 9 calls just from today and I spoke to most of them and they all sound wonderful. I am going to be interviewing them this weekend. If they are all as good as they sound it is going to be a very tough decision. Too bad I don't have people lining up like that to clean my house! I wouldn't mind a personal chef while I am wishing either. Oh what the hell how about a chauffeur too. HA-like I'm the first Mom in the world to have that pipe dream! :) We are thinking about signing Jeremia and Benny up for T-ball. What a riot that will be to watch. Keegan did baseball, soccer, and football, but never T-ball. It was always so much fun to watch Keegan score goals, touchdowns or runs. It will be a ton of fun watching the little boys running to the wrong bases while they try and grasp the game! I have to enroll them now but they won't actually start playing until March. I have to check with Benny's Dr.'s and make sure it is OK first.

Tuesday, January 11, 2005 1:38 am

Hello everyone,
Benny is still feeling great! We found a dog on Saturday. I kept debating back and forth on whether or not to get a pure bred lab or to rescue a lab/mix from the pound. I called several ads for pure bred labs and looked up pups at the humane society website. I had trouble getting in touch with anyone from the ads and had found a few cute lab mixes on the website some of them were going to be at different Petsmarts around town and then of course there were some at the pound. At our second Petsmart we found an adorable black lab mix and wouldn't you know it someone called me back about a pure bred while we were walking around visiting with the pound puppy. Derek and I were quite fond of the puppy we were visiting with so we decided not to even bother with a pure lab. They think Tonka, the puppy, is about 6 months old. They had to guesstimate as he was a stray. When Derek and the boys got to the pound to pick Tonka up, they informed him that they had accidentally given him to another family just a few moment earlier. Luckily they called the family that took him and they brought him back. He is sweet, couldn't care less about the cat, loves the kids and gets along great with Noogie, our other dog. The boys are ecstatic and Benny said it was OK that he is black even though he originally wanted a brown dog. He said Tonka is a good black dog. Benny has clinic on Thursday. Everything is pretty laid back and normal for a nice change. We are just enjoying the beautiful weather and loving that we don't have to be stuck at the hospital!

Friday, January 7, 2005 1:53

Benny is feeling great and is so excited about finding a dog. He says he wants a "baby brown dog" which is good because I want another chocolate lab, but wouldn't mind a black one either. I wonder if Benny will accept a baby black dog?

Today is mine and Derek's 10th wedding anniversary. We do not have a sitter so we won't be doing anything. I have an ad running in the U of A paper on the 16th so I am hoping to have a Nanny for the boys before February.

Have a great weekend everyone!

Thursday, January 6, 2005 8:04

Hello all!
Benny had clinic today for counts. His counts are good and the docs say it is OK to take him off of his antibiotic and anti fungal med. We have also been given the all clear to get a dog. We were told in the very beginning right when Benny was diagnosed that we couldn't get any new pets for fear of infection. Dr. Graham says it is now OK. We will start our search for the perfect brown or black lab this weekend.

Wednesday, January 5, 2005 12:37 am

All is going well. Benny feels good and has been spending all of his time playing and being a kid.

Look! I finally updated the pictures!

Monday, January 3, 2005 3:14 am

Benny is doing great! He is eating fine. He is more and more sociable every day. Happy New Year everyone. We just spent the weekend relaxing at home. We don't have to be to clinic until Thursday so we are just going to be hanging out and relaxing for the next few days.
Take care everyone.

Thursday, December 30, 2004 3:04

Benny is doing great. He has graduated to once a week visits to the clinic. He told me today that he doesn't have to go to the clinic to get "hooked up" anymore all he has to do is play and watch movies. He said it is fun now. We just go for labs, which means they draw Benny's blood then we sit for a few hours until the results come back and they tell us everything is fine and then we can go home. It's not very exciting, but that is a good thing. All else in the Petz house is going well. We are just anxiously awaiting starting a brand new and hopefully much better year. Fingers and toes crossed.
TTFN

Monday, December 27, 2004 2:00pm

Benny is doing great. He is eating enough that he doesn't have to be on TPN anymore. He is still on an antibiotic, anti fungal and Pepcid, but that is it. He is playful and talkative, to a certain extent. The boys had a great Christmas. They raked in a lot of loot. It was an easy going quiet day and we enjoyed it. We don't have to be back in clinic until Thursday. Hope everyone had a terrific holiday and here is hoping for a better New Year.

Thursday, December 22, 2004 11:54

I have totally been slacking on the updates. My sincere apologies. It isn't that I don't think about it several times a day it is just that I have been so very busy.
Benny is doing very well and can you believe it he actually ate two ears of corn and two helpings of baked beans. The Docs added a med that helps his food digest faster so it wouldn't sit in Benny's stomach so long and like an hour after he got that he decided to eat more in one sitting than he has eaten in weeks. They have switched his TPN to 18 hours every other day instead of daily. He has to go back to clinic on Friday, Derek's birthday, it was a choice between Der's birthday or Christmas day. They promised to keep it as brief a visit as possible. I sure hope it is brief, but either way at least we only have to visit the hospital we don't have to stay.

I have so many people to thank it's crazy. I think I will go in order of occurrence. I hope I am not forgetting to mention anyone. Thanks to Kim Borland and friends at Tucker Rocky for sending such beautiful ornaments! I can tell you put a lot of thought into each and every one, they are beautiful. Thank you aunt Carol Lindsey for coming to visit and bringing Nanny, Kayla and Janet. Kayla, thank you for having your class make ornaments for Benny's tree and be sure to thank your teacher for us. They are all lovely. Thanks to Benny's chemo angels Liz and Robin for always being so generous and thoughtful and going overboard for Christmas. You always bring smiles to our faces! Thanks to holiday angel Laura for the many special things you sent to all of us. The amount of time, effort, and thought you put into the package you sent is amazing! Thank you Kathy and Darrel for the gifts you brought the boys and for the gift cards too. We appreciate you thinking of us. Thank you to the mysterious Santa who dropped presents off at clinic today for Benny. Finally a GINORMOUS thank you to the wonderful folks on 3 East at UMC. We care for you all so much and it fills our hearts with such warmth to know that you care for us as much as we do you. You are a very special group of people, who have all touched our hearts in special ways. You have made this extremely difficult year a little easier just by being you. What enormous hearts you have. We are grateful to have met each and everyone of you. I cannot believe you took it upon yourselves to raise over $400 for us, and with a bake sell? You caught us by complete surprise. We were trying to figure out what we could do for you this Christmas to show our appreciation for all that you have done and then you go and do this. I hope each and everyone of you knows how truly wonderful we really think you are! I hate how we came to meet, but am eternally grateful that we did. Huge love and thanks to you all!

Love and hugs,
Amy, Derek and the boys

Monday, December 20, 2004

Hello all!
Benny is doing very well. He received platelets on Friday and we went to clinic today expecting he would need them again, but his numbers were good. The Dr. thinks that he probably won't need anymore transfusions for now!

Friday, December 16, 2004

I am so behind. Last year I mailed out Christmas cards the day after Thanksgiving. This year a mere 9 days before Christmas I am not even close to finishing signing and addressing them, not to mention my list is so much longer than it was last year. I have only done a minimal amount of shopping. I still haven't figured out what to get Derek for his birthday, Christmas Eve, not that he is all that hard to shop for. We haven't even scraped the surface of what to get the boys.

Benny is doing great! We have only been having to go to clinic every other day, but now that Jeremia is out of school for the holiday, things are going to get interesting. I have not had to bring Jeremia along on clinic visits since I was pregnant. Hopefully things will go smoothly. Benny will be there for most of the afternoon, because he will be getting platelets. I heard a rumor that he might actually get the whole weekend off...that would be nice. Nicole, their babysitter, is coming to watch them this weekend so we can get holiday shopping checked off of our to do list.

We made ginger bread houses this evening and the boys did an awesome job. I will hopefully post pictures of them soon.

Wednesday, December 15, 2004 2:46 am

I need to thank the Stumbo family and the Kaufman's for sending Benny ornaments. I also need to thank the teacher's and students at Bicentennial Elementary School in Glendale Arizona, specifically the boys and girls in Karen Thomas's, Becky Rarick-Supanroh's, Kym McIntosh's, Kim Cohill's, Betty DeMas's, Evelyn McKale's and Hope Cannons's classes (I hope I didn't leave anyone out). The ornaments, pictures, and cards you all made are beautiful! We hung most of them up today, but you made so many that there are still more to be hung up tomorrow. Thank you for all of your hard work and for making us and especially Benny feel so special. Love to you all! A HUGE thanks to Aunt Carol Lindsey for coordinating everything and shipping them all to us! You are thoughtful, creative, and sneaky (in a good way). We love you! I would also like to thank dear old St. Nick, who was kind enough to take time out of his hugely busy schedule, to send each one of my boys a personalized letter, and during his most busy season too! They are beautiful and sweet and brought tears to my eyes. Thanks Santa!

For as many disappointments that Cancer has brought to us it has brought some nice surprises too.

Benny had a good day today. He felt reasonably well. He ate very little, but played quite a bit. He took a long nap this evening then woke up and visited for a while before going to bed for the night.

Jeremia's performance went well. He was so cute! They sang Rudolph the Red Nosed Reindeer and Must Be Santa, and now both songs are stuck in my head, so Jeremia and I spent most of the evening singing those two songs over and over again while hanging paper ornaments and garland.

I had a bit of a weepy evening, but my husband pulled me out like only he can. There are good days and there are bad days no matter who you are or what your story is. Some days are tougher than others for one reason or another. It is just a fact of life, but what makes it a little easier to bear is having someone who is willing to stay up way past their bedtime to talk, but mostly listen, and for that reason my final thank you for today is to a person I would seriously be lost without ~ my wonderful husband Der, I love you!

Tuesday, December 13, 2004 11:58

Hello all.
Thank you to those of you from Tucker Rocky who have been so kind as to send Benny ornaments. They brought a smile to all of our faces, especially Benny's. Our tree is so beautiful. I think I actually like it better than a traditional tree like we normally have. This is so much more fun and no hassle of having to clean up pine needles or water the tree.

Benny went to clinic today and got platelets. I cannot count how many times Benny has gotten RBC's or platelets this past year. Everyone should donate blood! It has saved Benny's life countless times!

He is feeling worn out, but good. He is sssslllllooooowwwwllllyyyy starting to nibble on food. One bite hear another bite there. Everything just tastes funny. He actually spit out a bite of popcorn saying it was gross. Derek tasted it and said it tasted like normal popcorn, Benny's tasted buds are just all out of whack from all of the chemicals in his poor little body. He did have a bite or two of "white" ice cream and actually had several bites of ravioli, that was impressive. His playful moments are lasting longer. He and Jeremia were laughing up a storm in our bedroom this evening, but I didn't dare sneak a peak for fear I would be caught and they would lose the moment, so I just happily listened to the two best friends giggle and laugh and play happily. It got to the point that it was past Jeremia's bedtime, but I still couldn't bare to break up their happiness so I waited for them to wear down and then put Jeremia in bed for school tomorrow.

Jeremia is having a holiday performance tomorrow at school. After devastatingly missing his Thanksgiving performance, because Benny was in the hospital and Jeremia never told us he was in a play. I cried when I found out I missed it and Jeremia was disappointed we didn't go, but we didn't know about it. If we had we would have arranged something so one of us could have been there. Derek is going tomorrow and is going to record it and then tomorrow night we will all watch it together. That will be fun!

Sunday, December 11, 2004 11:27 pm

Derek took Benny to clinic today and Benny got platelets as well as his antibiotics. He is feeling good. He is so used to being waited on hand and foot that I think he forgets he can do things himself. Obviously he is worn out and somewhat weak, but he is able to support his own weight and sit himself up on the couch or bed, but why bother if you can have someone else do it for you? He was the same way after the last transplant and I had to start making him do stuff himself. It made him mad at first but then he realized oh yeah I CAN do this and that it is easier and faster to do it himself right away than to throw a temper tantrum because nobody will do it for him. Simple things like "Mom I want my juice" when the cup is literally 3 inches away from his hand or "Ma hand me my toys" when they are merely at his feet. I don't expect him to do anything spectacular, but if he can do 18 laps on a tricycle, then he can manage to pick up his own juice...little terd.

Saturday, December 10, 2004 11:56 pm

Benny was cranky today, but feels good overall. It feels so good to be home.

I am harassing the DR's about the antibody studies and they are starting to fully listen to me. I think they weren't really sure if I knew what I was talking about, but I have talked and listened to a lot of fellow NB parents, and learned about different protocols, side effects, new trials, what hospital does what and so on. It is a bit scary that most Neuroblastoma parents know more about the many aspects of NB than the docs. One of Benny's DR's said so today. I was talking to him about how unstable NB is and how many different ways it can go and the many stages and factors. It is actually possible for an infant to have NB and the parents never know because it can actually clear itself. Bizarre! Anyway he point blank told me that I could probably tell him more about NB than he knows by heart. In no way am I trying to say that the DR's don't know what they are doing. They just deal with so many different kinds of Cancer and treatment that it would literally be impossible for them to keep on top of all of the new treatments and studies. That is why it is so important for the parents to get and stay involved in every aspect, do tons of research, and ask tons of questions. Some DR's might be put off by your research but you have to stand up for your child and while I trust the doctors and think they are awesome, in no way am I going to just sit back and silently watch without doing my best to get educated, after all I only have to learn about one kind of Cancer and it's treatments they have to try and keep track of so many. When Benny was first admitted to the hospital right after we found the lump in his abdomen and they told us it was probably a Wilm's tumor, one of the ER docs who was to afraid (I guess) to tell me the truth told me not to worry it was a tumor but it wasn't cancer...liar. Anyway I ran home to get some things because it was obvious we would be staying in the hospital for a while and while at home I looked up Wilm's on the Internet and found that it was indeed cancer, I printed it out and took it to the hospital and tried to talk to them about it and they actually tried to tell me not to look stuff up on the Internet. That was at a different hospital than he is at now, but no matter it obviously ended up not being Wilm's anyway, though they do present themselves very similarly.
I feel like we are nearing the end of treatment, and it is scary. We still have radiation and accutane and hopefully antibodies. If for some reason we don't get to do antibodies there are only a few months left in Benny's treatment. That is not to suggest that this nightmare is anywhere near over, I honestly don't think it will ever truly end regardless of what the outcome is. If it is a good outcome and we succeed in saving Benny's life so he can grow up and actually experience life, a life not revolving around the hospital and treatment, then as wonderful as that will be and as much as I desparately want it I am afraid I will still always be afraid to let my guard down. He will have to have screenings regularly. He will also most likely suffer from long term side effects that will eventually show themselves, but that is a far site better than the alternative. If we were to lose this battle and our precious little man, our world would end as we know it and we would have to try and rebuild, but we would never be the same. How could you? Even the thought of it fills me with terror and a sense of not being able to breath. You may be able to learn to cope, but the devastation and sense of loss would always be there. We have already changed immeasurably in the past year. For better or worse we are all different and there is no going back. It is my mission to do our very best in making Benny's life the best it can possibly be and at the same time get to see him grow up and enjoy life and all aspects of it.
Whoosh, I am glad I got that off of my chest. I think I would have gone insane a long time ago if I couldn't journal. Thank you all for putting up with my ramblings. Sometimes, like tonight, I sit down to write a quick update and a few minutes later I get on a roll and let it all pore out. Better written down than left to float randomly in my brain.

Thursday, December 9, 2004 9:25 pm

Benny is feeling great. He did 18 laps on his tricycle tonight. He is coming home tomorrow! Derek is at the hospital tonight. We got a lot done today, but there is still more I need to do. I still have a ton of laundry to do, slowly but surely the piles are dwindling. Benny is excited to come home. I asked him if he even remembered what the house looked like and he said "yes it is made of bricks"...he is soooo cute.

And now for thank you's,
Thank you aunt Carol for driving to Tucson just to sit with Benny so we could go home and clean, you are generous, thoughtful, caring and a life saver!
Thank you Angel Laura for the enormous box full of all sorts of Christmas gifts and goodies. You are awesome!
Thank you Clearly Invisible Supporter for sending the boys such awesome shirts! They were thrilled! You rock!
Thank you to all of the men and women who cared for Benny over the last 24 days. Being in the hospital sucks, but you all make it so much easier. Going home is bittersweet. I will miss seeing you everyday and chatting with you. You are all truly amazing individuals and I am glad to call you all my friends. Thank you for taking care of our Benny, and the rest of us too!

Wednesday, December 8, 2004 6:16 pm

Now I really need a joint! As you all know tomorrow is the big cleaning day and we were having trouble arranging it, but we got Derek's wonderful aunt Carol who has been a life saver through all of this, she is going to come sit with Ben so Derek and I could clean. Now I will be cleaning solo, because my poor dope of a husband fell off of a roof. Thankfully it is not as bad as it could have been. He did not break any bones, but he did slice open his hands and had to have nine stitches in his left and 2 in his right. He insists that he can still clean. I have not seen Derek yet so I don't truly know how bad it is but if I know him he is sugar coating it trying to be tough. Why is it that men feel the need to be so macho when they hurt themselves but if they get the sniffles they think they are dying? Anyway he is OK but there is no way he can clean and do all of the other things he seems to think he can. I had to leave Benny alone at the hospital for the very first time since this all started. It was my goal never to leave him alone, not that the nurses aren't totally awesome because they are, but it was the one thing that I thought I could control...when will I learn to stop trying to be in control? Anyway I had to leave Benny so I could go get Jeremia from school. This is when it sucks that we are the only family in Tucson, I can't just make a quick call and have him picked up by someone else. Benny was fine with my leaving he didn't mind because I was going to get Jeremia, if it had been for any other reason he would have been upset.

I just have to laugh. Without a sense of humor I would be screwed.

Wednesday, December 8, 2004 2:02 pm

Day 14
Benny has been in the hospital for 22 days and he is going to be released on his 24th day, Friday. They wanted to send him home tomorrow, but we need time to clean and need to make sure all the carpets are dry from being shampooed, so they agreed to keep him until Friday. He should be off of Fentanyl by then and will go home on TPN and antibiotics. We will be going to clinic daily for quite some time because he will still need platelets and RBC's regularly, and the Dr's will check him out every visit and discuss anything that may be going on. After things settle down from the transplant we will be starting Accutane, this is the same stuff given to teenagers for acne. Benny's dose will be much higher than the dose given to a teen for acne. It is considered a mop up drug. What it basically does is finds random floating Neuroblastoma cells and matures them so they die. He will be doing radiation through this time too. After radiation he would just continue the Accutane until the Dr's take him off of it, and then it would be just a wait and see if the cancer comes back scenario. Neuroblastoma has such a huge reoccurrence ratio that I don't feel safe just sitting and waiting so I am trying to get Benny enrolled in antibody treatment. I am researching what studies he qualifies for. Dr. Graham didn't think that there were any, but said if I found some he would be more than happy to do his part in getting Benny enrolled. I found one that I know he qualifies for and one that I think he qualifies for. They both use different mouse antibodies that are given to kids with NB and what happens is the mouse antibody clings to the NB cell and then your normal immune system attacks the mouse antibody that is attached to the NB and kills both the NB cell and the mouse antibody, so basically the mouse antibody trains your immune system to kill the cancer cells, theoretically. It is still being studied and it appears to be working well but they aren't positive. I will be talking about this a lot more as I get more info and as I find out if Benny can do it. We may be doing some traveling because both of the studies that I am interested in take place in other states. That would be tough, but in the long run worth the trouble. I still have to learn more and have been reading a lot on the Internet and have a ton of questions for the Dr's. What did parents do before the Internet, when they needed to research treatment? When would you find time to go to the library and then you would have to thumb through medical books looking for a needle in a hay stack. Thankfully I don't have to worry about that.
I am willing to try just about anything to keep Benny from relapsing, because a relapse would be devastating and would have almost no chance of a good outcome.

Benny is feeling good. He just wants to lay around, vegetate and rest. He won't hear any complaints from me. I just ask him every once in a while if he wants to eat or go for a walk. So far all of the answers have been no, but eventually he will say yes.

Tuesday, December 7, 2004

We are trying to prepare for discharge day. Before Benny can come home we have to have the carpet shampooed and the whole house cleaned. The blinds have to be taken down and cleaned, the bathrooms have to be cleaned with anti microbial cleaner, the walls have to be wiped down, everything has to be dusted, all rugs linens and curtains have to be washed and of course there is the mopping and vacuuming too. The carpet cleaners are coming Thursday afternoon to do the carpets and the furniture. Derek is taking Thursday off and seems to think that he can do all of that cleaning by himself. He is an awesome man but that is just too much work to be done by one person in one day. I have been trying to find a cleaning service that can come out on such short notice or find someone who can sit with Benny so I can help Derek, but I am not having much luck.
We don't know what day exactly Benny will be going home, but I was told probably this week, so I assume Friday or perhaps Saturday.
He is feeling good. He raced his tricycle around last night for the first time in a while. He had fun, but wore himself out. So far today he feels good, but just wants to rest. Still not eating anything even though I persist in trying to tempt him. He doesn't even want candy or ice cream, but his appetite will come back eventually. He is still on TPN so there is no danger of him starving, he is getting the vitamins and nutrients he needs through that.
Right now all we are doing is trying to wean Benny off of the meds and get everything ready for going home.

Monday, December 6, 2004

I heard a rumor floating around here at the hospital...a rumor that Benny might be able to go home THIS week. Can you say WOW? His ANC is 1700 anything over 1000 means he can fight infection. They have the Fentanyl down to 25 mcg now. He went to sleep at 8 pm last night and did not wake up until 1230 this afternoon. A volunteer came and sat with him for a little bit today so I could run to the bank. He had fun with her they played and watched Spongebob, now he is yawning and may take a nap. He took a bite of banana today and then after chewing it for a minute spit it out because he didn't want it anymore, but at least he is trying to eat. Everything probably tastes really strange because of all of the medicine in his body, his taste buds are fried. He is cheerful most of the time. His legs are hurting from the Neupagin but that is normal, other than that he says he feels good. After he is released we still have to come every day to clinic, but as long as he keeps the fevers away we shouldn't have to be admitted again. Have a great day everyone.
TTFN

Sunday, December 5, 2004

Day 11
Benny is in great spirits. Derek said Benny barely put up a fuss about his bath and it was a little less of a fight to do his mouth care. His counts and weight are both on the way up. They lowered his Fentanyl to 35mcg per hour. He still has no interest in eating. He told Dad he'd eat tomorrow...still using stalling tactics...that's my Benny! They are testing his urine today because it hurts when Benny pees. Perhaps he has a UTI? He's still a ways from being sent home, but it looks like being home for Christmas is a huge possibility.

Saturday, December 4, 2004

Day 10
Guess who is sitting up in bed and playing and laughing. His counts are coming up. YIPPEE!!! His WBC has been .1 (the lowest it can get) today it is .5. He started perking up ever so slightly late last night so I hoped they were on the way up. Derek says he has been playing and laughing most of the day. The light bothers his eyes quite a bit. I think that is from the Fentanyl because whenever he gets a bolus it gets worse. Dr Adreansky said he is going to start weaning him off of the Fentanyl and see how he does. He decreased his hourly amount from 45 mcg to 40 and will decrease it 5 more this evening if he is still doing this well. The Dr. gave us Nistatin (anti fungal med) to rub on Benny's tongue in case it was thrush so last night I used a mouth sponge to do just that and while doing it Benny was screaming at me so I got a really good look at his mouth and on top of his tongue there was this big white clump I had Derek go get his nurse who came in and said that it was tissue from his tongue that would eventually fall off. It's called sluffing. She said the same thing is happening in his throat and intestines so not to be surprised if he starts throwing up or pooping chunks of tissue. I am so glad she warned me because I would have freaked out if she hadn't. Benny has a huge amount of really thick spit stuck in his throat and it causes him to cough and throw up. It is really nasty stuff. I was told that in some kids who can't or don't cough it up for whatever reason it just sits there in the base of their throat and eventually creates a plug so they can't breath. Luckily Benny is able to get it up although all of that coughing is painful and makes him angry.
The Doctor's said Benny can come home when he is off of the Fentanyl and TPN and his counts are decent if he isn't having fevers. It is still going to be a while before all of that happens, but Benny is starting to ask for candy. That is a good sign. :)

Friday, December 3, 2004

Day 9
Benny had significant pain last night and this morning, so much so that he was given a bolus of 30 mcg both times. It appears as though he might have thrush (a yeast infection in his mouth that turns it all white and can be painful) I have to swab his mouth 5 times a day with Nistatin (an anti fungal med), just what he wants...me shoving one more thing in his mouth. Between the mouth care, and the forcing Tylenol into him he is done with me, he sees me coming with something in my hands and he ducks under the covers. Begging him has never worked, reasoning and bribing used to, but not anymore. He wants nothing to do with anything that might involve moving or having his mouth touched in anyway. I was amazed I actually managed to get him to walk around yesterday it was brief, but it was excersise. He says "go away, I'll do it tomorrow" to most everything. A three year old procrastinator, stalling trying to buy time so maybe I might forget and leave him be. He is not to be underestimated the amount of stubbornness this kid has might actually be more than mine...imagine that. Stubbornness is necessity when you are trying to conquer cancer. The docs think that his counts will start to rise as soon as Monday. That would be nice. The walk yesterday helped his fever briefly, but it is still coming and going as it sees fit. Still nothing growing on the cultures so it is still a mystery where the fevers are from. This is his 17th total day in the hospital this stay and the docs say at least 10 more days, but I think it will be longer than that, but Benny loves to prove me wrong so I will just wait and see.

Thursday, December 2, 2004

Day 8
Not much to say today. Things are pretty much the same as yesterday. I will keep you updated should anything change.

Wednesday, December 1, 2004

Where did the year go? Just the other day I was taking down Christmas decorations, celebrating a new year, celebrating mine and Derek's 9th wedding anniversary, and then that day that horrific day that turned into a horrific week that turned into what is quickly approaching a horrific year. It feels like there are two worlds, two universes-one where everything is "normal" and the other where nothing can be taken for granted where the rules are constantly changing. A universe that exudes fear, but also hope. This is an impossible world to explain unless you live it, either by working in it or living it. I could try all day to explain it and it might give some an idea but it would not let them know or feel what this is like. It's like we all have a secret handshake, a secret knowing, a secret club that nobody wants to be a member of, but we are. I so wish that I could let "outsiders" in to live this life just for a moment to know what it is like. I suspect the world would be a different place if that were possible. To watch these kids is amazing. They have such spirit. Their strength is something to be admired. The doctors and nurses are to be admired too. They do not have to work so hard to try to save these kids. They are not stuck here by chance with no way of escaping. These men and women choose to help kids and families conquer the beast. They are to be commended for they have hearts of gold! For everything that cancer tries to take it also gives. I have learned how strong people can be when they need to be. I have learned that no amount of worrying will prevent bad things from happening. I have learned how powerful hope is and how scary it is when you can't find it. We now have a huge extended family full of wonderful people that we are grateful to know and love. I have learned that there is lots of love and kindness in the world and complete strangers who are willing to show kindness and love to people they just met or may never meet. In this secret world with the secret handshake you notice more of the details and less of the white noise. You learn how precious the "little things" in life are. Like I said it feels like just yesterday and in a weird way it feels like a lifetime.

Day 7
Benny is feeling as crummy as ever. He got blood today. They had to lower his dose of Fentanyl because he was getting confused and seeing things. He is now on a continuous drip but no longer gets boluses, he was getting up to a bolus of 30 mcg per hr on top of the 45 per hour constant drip. They have started giving him a more powerful anti fungal med since he has had high fevers all day. They speculate that it might be a yeast infection in his esophagus that is causing the fevers. He had to have an ultrasound this morning because they thought he might have something called neutrapenic colitis, but he doesn't thank goodness. His liver is enlarged but we pretty much already new that. The liver takes quite a beating through all of this, but it has already started to get better so I am sure that it will continue to improve. He has the darkest circles under his eyes, his lips are peeling off cracking and bleeding, his mouth is raw and sore but I have not seen any lesions in it yet but it hurts him to open his mouth so it is hard to get a good look. He has quite a bit going on, but he is handling it better than most adults. He is a super star!
Till tomorrow........

Tuesday, November 30, 2004

Today is day 6. Benny's Fentanyl has been upped repeatedly. He is on a continuous drip at 45 mcg per hour and can get boluses (extra) of 15 mcg every hour if he needs it. He hurts so bad at times that 15 minutes after he gets a bolus he asks for "more medicine in my tubies". He mostly just moans all day and can't sleep half the time. This is different to the last transplant in that he slept most of the time and he only got up to 20 mcg per hour of fentanyl. He starts GCSF tomorrow to help his counts start to rise, but that will take a while. He looks absolutely miserable and doesn't want to take his daily bath let alone exercise. The rules in BMT are that the kids have to be weighed every morning and every night, they must do mouth care at least twice but preferably 4 times a day, and they have to take a bath every single day without fail preferably before noon. None of this sounds like too big of a deal but when you have a baby who feels as bad as he does and then you have to force him to do these things that are for his own good but make him scream it is heartbreaking. Not because he screams at me to go away and leave him alone. That doesn't bug me because I would say the same thing if everyone was constantly pestering me for one thing or another, but it breaks my heart because he will beg and plead and say "please don't make me Mama" and all I want to do is make him happy and comfortable, but even more than that I want to help him to get healthy and keep away the cooties. He just doesn't understand why we won't leave him alone and even if he did understand why we don't I don't think it would make it any easier. Day by day we are getting closer to the end of this misery and Benny will hopefully get to be "just a kid" once again.

Monday, November 29, 2004

Today is day 5.
As far as we can tell there wasn't any permanent damage caused by Fridays incident.
Benny is having a pretty rough time. He is on Fentanyl for the pain. He started that on Sat. I just had them up the dose because it wasn't even taking the edge off. Benny spent most of last night just moaning and being miserable despite the fact that we gave him several different kinds of meds to help him rest and take the pain away. He has been fighting fevers for 3 days now. They haven't gotten too high, luckily. His blood cultures aren't growing anything so they aren't exactly sure why he is having fevers. They are changing antibiotics to a harder hitting one today just in case there is something trying to grow. Benny is exhausted but cannot sleep longer than 30 minutes at a time. It is such a restless sleep. His throat and butt hurt but mostly it is his stomach that has him in such agony. They are going to order him some sort of liquid that I am going to try to coax him into drinking though I doubt he will. It is supposed to coat the inside of his stomach and hopefully relieve some of the pain. I just wish he could rest. Dr. Graham says he is going to be in this state of discomfort for at least 5 more days and then hopefully his counts will start to rise. He has only lost about a kilo which is pretty good considering he hasn't eaten ANYTHING in 4 days and was barely eating before that, but that is what the TPN is for. He only weighed 15 kilos when we started this so the less he loses the better.

That's all for now. I added some new photos over the weekend so take a look if you haven't already.
TTFN

Friday, November 26, 2004

I am not too sure how to begin, but I guess I will start with Benny is fine now, but we had a huge scare this evening. OK as you all know I wasn't feeling well last night so Derek stayed with him so I could rest, by this evening I was feeling decent so I went to take Derek dinner (green chili chicken enchiladas YUM-thanks cousin Kathi) Derek met me downstairs where we did the trade off since Jeremia has a cough and a runny nose he can't go see Benny. Derek told me that Benny was sleeping and reiterated that he had had a tough day. When I went into Benny's room his eyes were closed but he wasn't sleeping. I told him Mommy was here but not to worry he didn't have to talk to me. He hates talking when he feels yucky. So I sat with him for a while and then he started moaning. I rubbed his back and held his bucket while he puked, then he started screaming in major pain saying his tummy hurt. I could hear his tummy loudly bubbling and poor Ben was writhing all over the place trying to cope with the pain. I called for the nurse and said he needed something for his stomach. The nurse left to call the doc and in the mean time Benny started shrieking that his head hurt I again called the nurse who suggested I give him his ear drops to which I scoffed knowing it was way more than his ear. After several interactions with a very flustered nurse Benny's eyes started rolling back in his head when I told the nurse he tore out of the room and quickly came back with a team of nurses and said that the resident had been paged and that Benny's BMT Dr. who had just gone home for the night was on his way back in. I called Derek who was in the cafeteria with Jeremia and told him he needed to get upstairs NOW. At this point I still have no idea what exactly is going on I just know its not good. Benny has stopped screaming and is now throwing up nonstop and not even lifting his head or anything he is just laying there letting the vomit fall from the corners of his mouth while his eyes are rolling. I am pretty sure this explanation only gives you a slight idea of how intensely freaky this was. The resident comes in and starts firing questions and about thirty seconds later I hear "insulin" and "who gave him a bolus of TPN?". I knew what insulin was for, what I couldn't figure out was why my baby was in "sugar shock." Apparently his nurse who had hung his bag of TPN only moments before Derek and I traded off, had inadvertently added an extra digit to the amount of TPN while programming the pump and so in the span of about thirty minutes Benny received 1/4 of a bag of TPN. His TPN was supposed to be given slowly for 16 hours. Receiving 1/4 of the bag in 30 minutes gave him way more sugar than his body could handle so there you have it. After insulin, a diuretic, and tons of fluids Benny's blood sugar is back to normal. His blood pressure and heart rate are still a little high and his potassium is a little low, but he is going to be monitored even more closely than normal and the Dr.'s don't think it did any permanent damage...let's hope not. The poor baby already had enough to deal with like he needs one more thing. The nurse felt horrible and apologized profusely. I feel really bad for him and appreciate the fact that he took responsibility instead of passing the buck, but have asked that he not take care of Benny again. I realize he is only human and everyone makes mistakes, but in the medical field you cannot make mistakes. They are too costly. He should have double checked the program before starting the pump. If no one had been in the room with Benny when his body started reacting to all of that sugar who knows how much worse it could have been. I never asked how high his blood sugar got, but it was too high for it to register on their machine so they had to send it to the lab. I will ask tomorrow. Benny is now much better. He is super thirsty from all of the sugar and worn out from everything, but he said he feels much better.


11/27/04 Day 3
Benny is doing ok today. He started having low grade fevers very early this morning and still has diarrhea. He received platelets today and will be getting RBC's tomorrow. We were told that it will probably get to the point that Ben will need up to two transfusions a day. They have started running the TPN again..at the proper rate.
We hung the Christmas tree Thanksgiving night and I will be posting pictures of it and his room hopefully later this evening. Please keep sending homemade ornaments. Our address is listed below under hospital information. The ornaments that many of you have sent are so pretty. His tree is turning out even cooler than I thought. I hope to get enough ornaments to not only decorate his tree but the rest of the room too.

Friday, November 26, 2004

The dreaded diarrhea has begun. I went home last night because I didn't feel well. Derek stayed with Benny and Derek said it was a long night. Still no fevers yet, thankfully. Jeremia has a runny nose and a cough so he won't be seeing Benny any time in the near future. I just have a really nasty headache and a wave of nausea here and there. Benny is having a hard enough time without us making it harder for him by giving him something. It is hard to stay away. I feel like I am neglecting him. Poor baby was up most of the night with diarrhea and throwing up. Unfortunately it is still going to get worse before it gets better. He is such a tough little man.

Thursday, November 25, 2004

Happy Thanksgiving! Benny feels about the same as he did yesterday. I think his ear is hurting a little worse though. It is hard to say though since he won't admit to hurting when you ask him. I think he thinks if he admits he hurts then you are going to try and fix it and in his experience fixing stuff generally hurts. On a side note I am not sure what the in hell we are going to do. I feel as though I might be getting sick and it looks as though Jeremia is too. Obviously if we are sick we can't go around Benny. Derek is taking tomorrow off so I can go home and hopefully nip whatever is trying to make me sick in the bud. If I am sick I don't know how I will be able to bear being away from Benny. There is nothing about this cancer crap that is easy. It reaches it's nasty little finger into places you never thought of. It touches and affects so many parts of your life. It is in no way just a physical disease. It picks up your life, your family, your sense of security, your sanity and flips it all over and knocks you on your ass and just when you think you can deal, that you can handle it, that you can tough it out, it sticks it's nasty little leg out and trips you. OK enough whining. I am just upset at the prospect of having to stay away from my baby when he needs me most. I am going to go home eat soup, take vitamins, drink lots of water, and sleep. Hopefully it is just exhaustion and stress making me feel yucky and not a bug of some sort. Thanks Dad and Cami, Helen and Marla for checking on us today. Hope everyone had a good day.
TTFN

Wednesday, November 24, 2004

Today is the day. Day 0. Benny just received his stem cells. To quote Benny's nurse today Neil "It is a very anticlimactic event". There is always so much build up and preparation, but the actual act of transfusing the stem cells takes less than 20 minutes and is no big deal. It's what the stem cells do once inside that is important.
Benny is feeling yucky and it is only getting worse. He still has a few moments when he tries to smile and is playful, but he is starting to hurt. His throat or hole as he calls it is sore and his ear is bugging him again. These were all things that happened with his last transplant. Luckily so far he has not had diahrea or a fever but it is unfortunately only a matter of time. They are planning on starting Fentanyl for pain again. He starts TPN later today. Dr. Adreansky had a good analogy of chemo. What he basically said was imagine that their was a tree full of birds all of them are red except one, the other is blue. You want to shoot the one blue bird so you take a shotgun and in one shot you manage to kill the blue bird but have also killed a bunch of the red ones at the same time. That is what chemo does the blue bird is obviously the cancer but the red birds are his throat, stomach, liver, hair, mouth and so on. Chemo is such a crude drug, but it is unfortunately what works best.

Thanks to everyone for checking up on us and for leaving so many well wishes in the guestbook.

TTFN

Tuesday, November 23, 2004

Tomorrow is day zero, stem cell day. Benny is still super nauseous they have been giving him Fenergen (sp?) for his nausea and it knocks him out. We are trying to use it sparingly because it can cause something similar to a seizure in that his jaw could lock and he could temporarily lose feeling in his face and he is allergic to benadryl which is what they use to treat that type of reaction. His lips are sore and bleeding if you wipe his mouth skin comes off. He doesn't have sores in his mouth yet. He tries to eat but he only takes one or two bites and then says his tummy hurts. He has been throwing up regularly and has been having dry heaves. He is still in decent spirits considering everything he is going through. I would be a bear if I were going through even 1/4 of what he is. He hates mouth care time. That is when I have to swab his mouth out with medicated mouthwash with a sponge on a stick. He has to do that every 6 hours and cries and hides under the covers. I think it is mostly because it tastes gross, but I know when he gets sores in his mouth it will also be because it stings. He will be started on TPN tomorrow after stem cells. He has lost some weight because he has no appetite and what he does eat doesn't stay down. His counts have not hit zero yet, but they will, and when they do Benny is going to start feeling much worse.
For those of you who read yesterdays post and are wondering what in the heck it meant when I said Benny's liver enzymes are up here is my low tech definition.
Basically what was explained to me was that the chemo is killing off pieces of Benny's liver, and when the liver is damaged it lets out lots of enzymes. I am told that they expected this and it is a totally normal reaction to the chemo and not to worry that by tomorrow the level of enzymes in Ben's blood should lessen and the liver will start repairing itself. He is in no danger of losing his liver at this point it has just been put through a lot and is sick.

Goodnight everyone.
I will update tomorrow.

Amy

Monday, November 22, 2004

Well Benny woke up today at 8 am and by 8:40 he had thrown up 4 times. He is feeling weak and hasn't eaten or drank anything since yesterday and has not interest in consuming anything. For the most part he just wants to be left alone. He tries to be happy every once in awhile but then realizes it takes too much effort and goes back to staring off into space or zoning out in the TV. The Dr's were surprised it took him so long to start to feel crummy, so was I. Today is -2. He is getting the last round of chemo today and hopefully the last chemo he will EVER have to take. Tomorrow they are going to give his body a rest and then Wed. is stem cell day. The Dr. says Benny's liver enzymes are up, which is a normal side effect of VP 16 chemo. He said there isn't anything they can do about it except keep a close eye on it. Everything is going the way it is expected so far.

Thank you Carol and Kathi for coming to visit again. Thanks Kathi for helping Jeremia make Christmas bells and for making us more yummy food and especially for my sugar cookies. Thank you both for always finding the time to come see us and for bringing the boys so much fun stuff. Jeremia keeps eyeballing all of the wrapped gifts you brought and asking me when exactly he will get to open them.

Thanks to Angel Robin and Angel Liz for the packages for Benny and his brothers. You always make their day.

I will update if anything changes.

Love-

I just realized today's date-today is the 22nd. January 22, 2004 was when Benny was dx and given his first round of chemo and November 22, 2004 was his last round of chemo EVER (hopefully)! Exactly 10 months apart, makes it easy to remember, not that I would ever be able to forget...
Last round of chemo is cause for celebration too bad Benny is in no mood to celebrate, but his daddy and I are so very glad that that part is over. Whoo Hooo :)

Sunday, November 21, 2004

Benny is still feeling pretty decent. He had a very busy day yesterday. He did 26 laps around the ward on his tricycle. 16 laps = 1 mile. He also had visitors. Two Shooze and Corinne came and saw him and Corinne brought him all sorts of cool stuff and some things from Cub Scout Pack 178 Bear Den six. Thanks so much for all of the cool stuff for Benny and all of the decorations and ornaments and the cool book. He is loosing his appetite and starting to have waves of nausea, but on the whole is feeling good.

Thursday, November 18, 2004

Hello everyone! Thanks for checking in on Benny. Today is -6, he is doing fine so far. He's getting lots of excersise with all of the tricycle's and push cars they have in the playroom. Tonight he and Jeremia did more laps around the ward than we could count. We are just trying to enjoy this "easy" week and prepare for the long weeks ahead.
TTFN

Thursday, November 18, 2004

Thanks Helen, Cam's mom is absolutely right, I couldn't have said it better myself.


Today is day -7...the first day of chemo He has 72 hours straight of chemo (Carboplatin and VP16) then a day of rest and then two days of a Chemo (Melphalan) and then another day of rest and finally that brings us to stem cell transfusion day also known as day zero. His counts should start to rise somewhere between days 14 and 21. He is currently getting low dose heparin, fluids, Bactrum (antibiotic), Zofran, and then the chemo. He has six separate pumps on his IV pole and a mess of tubes to be dealt with. He is feeling good. Surprisingly he took a long nap this afternoon which is not his norm. His appetite has already decreased, but I am not so sure it has as much to do with the meds as it does that the food here sucks. I went and got him a ton of snacks while Dad was here with him this evening I stopped and Target and got him some goodies on my way home to shower.
At this point there isn't a whole lot to report. The day flew by it felt like I was always doing something between the mouth care every six hours, the daily bath, changing his diaper every two hours if not more, his daily exercise, and of course tending to his every need and having to alcohol off everything that accidentally falls on the floor and then taking care of Conrad changing his diapers and feeding him every 3 hours getting him a bath and carrying him around everywhere in the sling. Between all that and trying to keep myself fed and checking my 50 e-mails a day, I think it is safe to say that I am exhausted, and THIS is the easy part. What am I going to do next week when it gets hard? I don't know I just have to laugh right know and now that some way we will make it through this just like we have everything else.
Well that's it for me I am beat. Cheerio everyone have a good night and I will hopefully update tomorrow.

Monday, November 15, 2004

Hello all! Tomorrow is admission day. Today was Benny's central line surgery. It went well. They had to use an artery in his neck since this is his fourth line and they were running out of options. Since it is in his neck which he obviously moves a lot it is very sensitive and will take some getting used to. His movements are very stiff as he his afraid to move his head because it hurts even though he swears it doesn't. I don't know why he tries so hard to pretend stuff doesn't hurt. I don't know if he is trying to protect us or if he thinks if he doesn't admit it hurts it won't hurt anymore. He is my brave little man.

Jeremia skipped school today to come to the hospital with Benny. It hadn't occurred to me until last night that Jeremia was involved with almost every clinic visit and hospitalization from the beginning in January until just recently when he started Kindergarten. Last night he asked if he could come today and then it dawned on me that he is missing that time and feeling left out, and since I don't think it will be a good idea for Jeremia to come around Benny with Kindergarten germs while Benny is Neutrapenic I figured it would be good for Jeremia to come even if he missed a day of school. Benny liked having him there too.

Tonight the two of them were lying on Jeremia's bed watching TV and Jeremia was rubbing Benny's head. I asked Benny who his best friend was and without a moments hesitation he said Jeremia. It warms my heart and breaks it all at the same time...a sensation I suspect only a parent truly understands.

I E-mailed some of you with a link to this site, but I want to list the address for those I don't have e-mail addresses for. Candlelighters foundation is wonderful and their site is full of all sorts of great information.

http://www.candlelighters.org/cancerawarenesstree2004.stm

I think the cancer awareness tree is an awesome idea and I urge you all to buy a ribbon. They will write Benny's name on it and mail it to you or to us if you don't want it. Many of you have asked if there was anything you could do well I never know what to say but this is it this is what you can do. Donate a dollar, donate five, give what you can. All we want for Christmas is for this nasty beast that destroys families, steals innocence and takes lives to be eradicated, so not one more child has to go through this. If you are family and can't figure out what to get Derek and I for Christmas this is perfect, or you could donate to Caringbridge, Lunch for Life, or CureSearch. Please consider donating instead of buying us something. Childhood cancer is a much more worthy cause than Walmart or Target or wherever. :) Of course the boys just want toys-hehe...like you didn't already know that.
Also don't forget about the paper ornaments for Benny's tree, even if we get to be home for Christmas, we won't be allowed to have a live tree so we will be transferring the paper tree from hospital wall to house wall if we get sent home in time, but I am not counting on it.

I will be bringing my lap top with me to the hospital as usual so I will update as often as Benny and Conrad allow. Keep us all especially Benny in your thoughts! Thanks :)

Amy

Friday, November 12, 2004

Benny's BMT schedule has been changed. He is now scheduled to start his third and final transplant on Tuesday the 16th. He is having his line replaced on Monday the 15th. I am glad that the BMT has been moved up but now have a weeks worth of stuff to do in a weekend, but if I can plan a vacation to Sea World in two days I can handle this, it just won't be as much fun...huge understatement. To say that I am worried would be another huge understatement. I am shakin in my boots I am so petrified. I told everyone at BMT clinic how scared I am and they all said they wish they could reassure me but they can't because there is no way to know for sure what the outcome will be. I just keep thinking what if this is the last week we ever see Benny happy? What then? No parent should ever have to worry about these things and the most devastating part is that Benny is no where near the first kid to go through this and is far from the last who will have to do this. I have been given a consent to read and sign, just like I have to do with everything Benny has had to go through. This one is a little tougher to read though, not because it is difficult to understand, far from it. It is blunt and factual and everything it should be, but it isn't anything a parent would ever want to hear in reference to their child. I will quote one part that struck me in particular "It is not possible to know whether or not any personal benefit will result from the use of this treatment program. At the least, he/she will undergo substantial discomfort associated with the intensive therapy and approximately 6 weeks hospitalization." I am not a huge fan of statistics I think that they are mostly a bunch of BS but it is hard to bounce back when your Dr. says that there is only a 30 to 40% chance of Benny making through this procedure. It is obvious that there is no choice in the matter, Benny must have this if he wants any chance of surviving, but why does it have to be so hard on his itty bitty body. Jeremia asked me today why the Doctor's want to keep making Benny so sick. I explained to him that they don't want him to get sick they want to make him well, but in order to do that they have to give him lots of medicine that makes him really sick. I explained that Benny will be in the hospital for a long time and Jeremia wanted to know if Benny would come home. Talk about ripping out your heart. I told him that the Doctor's will do their very best and we all sure hope Benny will come home and be healthy and happy like he used to be. I normally like to keep a very positive frame of mind and try not to dwell on the worst parts. I am always trying to find the good, but every once in a while I have to fess up and let it loose and vent. As always please don't misinterpret this as giving up or losing hope. I am not. Like a steam cooker I just have to let off some of the pressure every once in a while...anyone got a joint? J/K...maybe ;)

Thursday, November 11, 2004

After a bit of a hiccup all scans are back clean. The hiccup I speak of happened today. I took Benny for his CT, came home and as soon as we walked in the door Derek handed me the phone. It was Dr. Graham saying something was on the scan and we needed to go back for repeat scans ASAP. Luckily after 3 more scans just to be sure, nothing showed up. Phew, what a relief!
Benny handled all of the scans this week just fine. Yesterday when they were sedating him for his MIBG they maxed out on the amount of medication they could give him to knock him out and it only put him out for about an hour, which means he has most likely developed a resistance. Today they didn't have to sedate him because I bribed him into holding still. I still haven't heard about a day or time for his surgery next week, but will find out tomorrow at clinic.
The idea for the paper Christmas tree ornaments has taken off like wildfire. I am so excited. Keep spreading the word.
I am working on something with fellow NB parents. We are going to have our own Lance Armstrong type bracelets made. We are just trying to come up with the perfect phrase and color and then select a manufacturer to make them. I have found several companies who make them we just have to find the cheapest and make a decision on color and what it should say. We will be selling them and donating all proceeds to NB research. I know I can count on most of you to buy one or more. ;)
TTFN

Monday, November 8, 2004

Just a quick note to let everyone know Benny is feeling good and doing fine. Making up for all of the food he didn't eat right after this last Stem Cell Transplant, he is eating everything and is thankfully putting on a little weight...he will need it later this month when he stops eating again. We are very happy to see him with such an appetite. He and Jeremia are playing and fighting just like usual. That is nice to see after he was so disinterested in playing for so long.
Scans start tomorrow, first the bone scan, then Wed. the MIBG scan (that is the scan that lights up any NB (Neuroblastoma cells) in the body, and then Thursday is the CT scan.
TTFN
Amy
PS I was just IMing with one of Benny's chemo angels, Angel Liz, and she was asking me how we were going to cope with Benny potentially being in the hospital for Christmas and I told her we would be doing a Christmas week just like we did for his birthday where he and the other boys get to open several presents everyday for a week or maybe longer and that I want to put up a huge construction paper tree in his hospital room and she said she would send some paper ornaments and other decorations. So I thought what a great idea ... if everyone would make at least one ornament, sign it and mail it to us to hang on Benny's BMT Christmas tree, how fun would that be. So I am asking you all to send in paper ornaments especially those of you with kids and I know some of you are teachers what a cool class project. Let me know what you all think.

Friday, November 5, 2004

Benny is feeling good. He is almost back to his normal self. He has the weekend off. On Tuesday, Wednesday, and Thursday next week he has various scans to make sure the cancer still appears to be gone. The week of the fifteenth is when he will have his surgery to put in the double central line since they messed up last time and only put in a single. A single will not work with all of the medications he is going to need IV during the transplant.
That's all for now. Have a great weekend.
Amy

Tuesday, November 2, 2004

Benny's 3rd and final transplant will start the 22nd which is the Monday before Thanksgiving. That means obviously we will be in the hospital for Thanksgiving and it is a pretty good bet we will still be there for Christmas. While I am a little sad he will be in the hospital for the holidays, I am mostly happy that we are finally going to get it over with. We will make the most of it while he is in there. Christmas shopping will be difficult, but we will figure something out. It is all in hopes of curing Benny and that is worth all of the Christmases from now until eternity!
Benny is on Vanco for his infection in his line and will remain on it until he gets admitted. It is a Staph infection and they want to be safe instead of sorry. I would hate for this transplant to be postponed because of an infection and I know they feel the same way. We have to go back to clinic on Friday and will be going Tuesdays and Fridays until admission. They have to check his Vanco levels to make sure it's not damaging his kidneys.
Thanks for checking on us. Have a good day!

Monday, November 1, 2004

The clinic called us yesterday morning to tell us that the cultures they did on Friday just as routine grew which means Benny has another infection in his line. He is now on Vanco (antibiotics). He isn't having any symptoms of being ill it's just the cultures.

Carol, Kathi and Jeff came for a visit on Saturday.
A HUGE thanks to Kathi and Robert for making all sorts of goodies. Derek and I have all but stopped cooking completely, with everything else that is going on it is just a pain to try and decide what to eat, go grocery shopping, and cook. We have spent a fortune on take out. Kathi brought a bunch of homemade precooked food stored in gladware so we can just grab whatever out of the fridge or freezer a few seconds in the microwave and presto...food and good food at that.
Thanks for taking such good care of us!

The boys had fun and looked so cute yesterday. I posted pictures.

I hope everyone had a good Halloween!

We go back to clinic tomorrow. I will update with any new info as usual.

Amy

Saturday, October 30, 2004

Benny went to clinic yesterday for the Halloween party. He won a ribbon for his costume and got lots of loot trick or treating in the hospital. Conrad had a Dr.'s appointment earlier in the day where he got his 2 month shots. Jeremia got sent home from school sick after throwing up in the computer lab. He seems to be fine now though.

Benny is doing better as each day goes by, but he is still very run down. It will take him a long time to get back to normal especially after the big one. It is so sad. I look at pictures of him before he got diagnosed and started getting chemo and it is a completely different little boy and not just because of the hair. He no longer has the same look of innocence that he once did. He now has this sad knowing look in his eyes that just breaks my heart. He is still gorgeous of course and he will always be our Benny, but he has changed in indescribable ways and will never go back to being the Benny he once was. Actually now that I think about it we have all changed and none of us will ever be able to go back to the way we were. Me, Derek, Keegan, Jeremia...we are all changed in so many ways because of this nasty disease. I personally have learned a lot and am grateful for some of the lessons I have learned, but damn talk about a horrible way to learn. I should be able to look into my kids eyes and see innocence not despair. I was telling Derek about a little 9 month old I read about who has had six rounds of chemo and Jeremia happened to be listening and asked me if the chemo killed the little girl. I was taken aback, but told him no it didn't and asked him if he knew what chemo was and he answered "Yes, it's for Benny's tubies." What gets me is how observant these kids are. The only thing we have told Jeremia is that Benny is very sick and we are trying to make him better. We never mentioned death or what chemo is or where it goes, but he is no dummy...he knows more than we realize just as Benny does. They are paying attention and listening when you don't think they are. They may not be able to explain it to you like an adult could, but by no means does that mean they don't know on some level what is going on. Man oh man do I miss the innocence and naivety, but I guess as shitty as it can be it is all part of the journey.

I hope everyone has a safe and happy Halloween. I hope to be posting cute costume pictures sometime next week.
Take care all.
Amy

Wednesday, October 27, 2004

Hello
I am glad to say that Benny's counts are up and he is no longer neutrapenic. He doesn't have to take anymore antibiotics and today is his last day of Fentanyl. The only thing he has to take is oral Pepcid. His tummy is still bugging him a bit but that should clear up in the next day or so. He still has that wretched cough but at least it doesn't seem to be hurting him anymore. Dr. Graham said he could have the rest of the week off, but Friday they are having a costume party in clinic so we will go just for that so Benny can dress up in his fireman costume. I will take pics and post them if I can get the darn fangled picture updater to work for me. Anywho that is all for now.
Have a great day everyone.


OK I think I got the darn pictures to work now. There aren't any of the boys in costume yet, but there will be soon.
I have been trying to update the pics all week and it has not been cooperating. Let me know if you are having trouble viewing them.

Monday, October 25, 2004

Thankfully, Benny is doing better. His counts are on the rise. He got Red Blood Cells yesterday and I think that helped a lot, it usually does. They are lowering the dosage of Fentanyl and trying to start weaning him off of it. We actually get tomorrow off. Woo Hoo!
Thanks to everyone and their well wishes, prayers, and emotional support. It is all greatly appreciated.
Please don't think that just because I have a bad day that I am giving up or losing site of the "big picture" I just need to vent every once in a while. I know you all understand.
Thanks for taking the time to stop by and check on us.
TTFN

Saturday, October 23, 2004

I hate seeing him like this. This is the longest Benny has stayed feeling so crummy. It is just a huge reminder of how powerless I am. I can't take this all away and make my baby healthy again...OH how I wish I could. The Fentanyl dosage has been upped again and he is now showing signs of an allergic reaction to it. He is getting an itchy rash just like he did with all of the others, so now I don't know what we are going to do. I guess we will find out tomorrow. His poor throat hurts so bad from the ulcers and on top of that he has this nasty cough that makes them hurt so much worse. The past two weeks he just hasn't been his normal self, because he feels so bad and it's only getting worse. He slept all but a few hours today and when he was awake no one was aloud to talk to him because all he does is scream at you and tell you to go away. The most heartbreaking thing for me is the fact that this is an easy one compared to the big one next month. I honestly don't know how we are going to do it. I don't know how he is going to do it and I don't know how I am going to stay strong and not break down like I sometimes want to. If any Mom's who have been thru this with there kid/s could give me any words of advice or anything that will help prepare me I would greatly appreciate it. E-mail me or sign the guestbook please.

....if only I had a magic wand............
-Amy


UPDATE 10/24/04
I have a bit of good news, Benny's counts were less than .1 yesterday and today they are up to .5 which is a very good thing and means that Benny should only hurt for a few more days.

Wednesday, October 20, 2004

Hello,
Benny is on Fentynal pain medicine IV 24 hours a day and I give him extra injections at home as needed. It has helped with managing Ben's pain. His butt seems to be healing since they had us start using an additional cream on top of the others. This cream has cholesteral medicine in it that binds the acid in his poop before it can eat his skin. It works very well! Benny's appetite is coming back slowly but surely and his spirits seem to be rising. He was pretty down in the dumps there for a while. Who could blame him...poor little guy. He is still on a ton of medicine, but it seems to all be helping. We are at clinic and he is getting platelets as well as antibiotics and neupagin. He gets Zofran, Pepcid, and Fentynal IV at home, as well as ear drops creams for his face and his butt and special mouth washes for his mouth ulcers. That's it for now. Have a good day.

Monday, October 18, 2004

Hello,
Benny is still feeling pretty crummy. He is on pain medicine for his butt. The first layer of skin has completely broken down and the second layer of skin is extremely painful. I have to give him an injection of pain meds before changing his diapers. He has had several low grade fevers, but nothing high enough to require staying at the hospital. He is already on antibiotics so there isn't a whole lot they could do at the hospital that I can't do at home. He isn't having nausea anymore and actually ate a little last night, but nothing this morning. He asks for food but won't eat it, but I keep giving him anything he asks for in hopes that he might take a bite atleast. He isn't on TPN (IV nutrition) anymore. We are at clinic right now but I don't know his counts yet. We should be starting the neupegin (the medicine that helps his white count improve) today and that will be a huge help!
TTFN

Friday, October 15, 2004

Things are pretty much the same as they were in the last update. The only changes are that his mouth is breaking down and he has blood in his stool. These were both expected and are only temporary. Benny is complaining about his ears hurting today. The Dr. hasn't looked at his ears yet but will before we leave clinic today. I will update if there are any changes.

Wednesday, October 13, 2004

Benny is feeling the effects of chemo today. It started late last night. His stomach is really causing him pain and he starts throwing up about a half hour before his Zofran is due. He has broken out in a rash that itches. It started on his chest around his central line and is now spreading to his armpits and his neck and head. Dr. Graham is going to give him Pepcid to help with his tummy. As for the rash we have to figure out if it is the chemo or the Zofran, please, please don't let it be the Zofran. I don't know what we would do without it. He is getting his stem cells today. I haven't gotten his counts back yet but they are obviously dropping. I will update if anything changes.

UPDATE
Benny's counts haven't dropped they have plummeted, much faster than ever before. He got his stem cells so we will just have to wait for them to work their magic. He is starting antibiotics today and will stay on them until his counts come back. They have upped the dose of Zofran so with that and the Pepcid hopefully his tummy will feel a little better. The Dr. looked at Benny's rash and says it is from the Topotecan (chemo)and he says it is going to get worse. He also said Benny's mouth and bowels will probably be effected since his skin is reacting this way and he will most likely need pain meds before too long. He is going to start TPN (IV nutrition)tonight since his appetite is so low. On top of all of this the poor guy has ringworm on his cheek. Dr. says we should check Jeremia since it is probably something Jeremia brought home from kindergarten.

Benny has slept for most of the day and is in no mood for any of this. He wants to be left alone. I don't blame him. The poor little guy feels like dirt. Hopefully this will all clear up quickly.

Monday, October 11, 2004

Today is the last day of chemo. Benny is doing very well. He hasn't had any nausea yet, thanks to Zofran. He has managed to keep a little of his appetite. He will continue to need Zofran for at least the next 3 days to keep away the nausea. We will have to come to clinic for the next week or two daily for blood draws and anything else that might be necessary like the usual platelets, RBC's or antibiotics. It has been an exhausting five days, but Derek was extremely helpful as usual and let me get some sleep this weekend. That's it for now. Have a great week.

Thursday, October 7, 2004

We are at clinic right now. My desktop won't let me update the journal. I think something in my security settings is messing up, but nothing I have tried has fixed the problem so far. So for now please be patient with how long it takes me to update because I have to do it on the laptop and dragging it out is a pain.
Anyway onto Benny and how he is. They removed his line last week and put a new one in yesterday. We just found out this morning that they put the wrong kind of line in...lovely. This one will do for this BMT but he will have to get a different one for the long transplant. He is feeling good for the most part, he is a little sore where the new line is, but tylenol fixes that. Do to the fact that there are no available beds we are doing this transplant outpatient. It's Topotecan and Cytoxin which are the kinds of chemo we did outpatient before. The only differences are that the doses are MUCH higher, like 8 and 5 times higher. Benny has to be on continuous fluids and some IV meds as well as have his diaper change every 2.5 hours continuously around the clock. Luckily or unluckily depending on how you look at it I am already up with the baby that often anyway. This week will be very busy. All day at clinic and then I will be doing all else at home. Everything else is going ok.

Wednesday, September 29, 2004

Benny has another infection in his line. It is a different kind than the one that caused the fever. Dr. Graham said that Benny would have been in serious danger with this last infection if his counts had been low. Thankfully he had an immune system. He is still on antibiotics from that infection and now with a new and different infection Dr. Graham has decided that Benny's line has to go. He will be having surgery on Thursday to remove the line and then given a few days to recover and make sure all bacteria is out of his system. Then he will have another surgery next week to have a new line put in and will be directly admitted for the next transplant from there. So now it looks like the first week of October which means that the big one is pushed back until about the second week of November which raises the chances of Benny being in the hospital for Christmas.

Thursday, September 23, 2004

Hello all!
I have a lot to tell you. First off Benny's transplant that was supposed to start today was postponed till next week. It was put off because of this cold he has. The doc's wanted to make sure it isn't a virus before they give him chemo. So as long as it clears up by next week he will start his five day stay then. Last night I flushed Benny's lines at 9:30 and at 10:45 Benny started shivering and crying that it was too cold. His temp was 101.4. I called Dr. Graham and he said hospital. By the time we got to the hospital at about 11:15 his temp was 104 point something. I can't remember the point number. We had to put cold compresses all over the poor baby who was freezing to begin with, but his heart rate was through the roof and his fever was dangerously high obviously so we didn't have a choice. We of course gave him Tylenol. True to Benny's style an hour or two later after throwing up he fell asleep and the fever was gone. He is on antibiotics and we will be going to clinic daily again. Dr. Graham sent us home and said come to clinic tomorrow. Dr. Graham ROCKS! Benny is feeling fine now and as usual you would never guess he was in the hospital only an hour ago.
Have a great day!

Sunday, September 19, 2004

Not much new here, but I had to share a story about Jeremia and Benny. They were sitting at their craft table coloring and I was sitting in my chair feeding Conrad. Benny and Jeremia are carrying on one of their conversations like they always do and I was nonchalantly listening as usual. I love hearing what they talk about when they think I am not paying attention. They have such adult conversations sometimes; it's always amusing to me. Anyway Benny out of no where says "Jeremia, I love you. You are my best friend ever". To which Jeremia replied "Benny, I love you, you’re my best friend ever too".
I could've run over there and scooped them both up and gobbled them right up but I refrained. I didn't want them to know I was listening. So I just sat there feeding Conrad with watery eyes and a huge lump in my throat. I am so thankful that even with all of their brotherly fighting and squabbling, my boys really love each other and aren't afraid to express it! I guess I am an over emotional nerd.

Jeremia is still coughing, but I think he is good enough to go back to school tomorrow. Benny seems to go back and forth between feeling good and feeling yucky. Conrad and Keegan are both feeling fine, and Jeremia was kind enough to share his sick germs with me so now my throat hurts and I have a yummy cough. If it doesn't go away by Thursday I won't be able to stay with Benny at the hospital so it better go away soon!
That's all for now.

Thursday, September 16, 2004

Poor Jeremia is sick with a nasty cough and missed school today and I will keep him home tomorrow too. I hope Benny doesn't get it since he is supposed to start BMT next week. He has been complaining about his left knee and ankle hurting for the past couple of days, which concerns me. We will mention it to Dr. Graham on Tuesday. Conrad is doing ok, but the Dr. is a little concerned because he isn't gaining weight fast enough so in the next two weeks we will be doing our best to bulk him up. Other than that things here are as normal as they ever are. Not too much is going on, and that is fine with me!

Monday, September 13, 2004

There's not really anything new to report. We don't have to go to clinic at all this week! We are just enjoying the free time. We had a good weekend. My sister Cami and her kids Cassie and CJ came and visited this weekend. That was fun for us.
Other than that nothing is going on. We love keeping things nice and boring. The less excitement the better!

Tuesday, September 7, 2004

He's here he is finally here. Derek Conrad Petz arrived yesterday Sept. 6th at 1:02 pm. He weighs 8lbs 10 oz and is 21 inches long. Go to www.wildpetzfamily.com for pics.
I was induced and was only in labor for 3 1/2 hours. It only took 2 pushes. Conrad has been a very quiet and as far as we can tell a healthy baby so far. Benny is extremely proud and says "I happy you brought my baby Conrad home". Thanks mom for coming and staying with the older boys. Thanks to all the great Dr.'s and Nurses who helped!
I will update tomorrow. Conrad has his first Dr.'s appt. and Benny has clinic.

Thursday, September 8, 2004
Both appointments went fine yesterday. Once again I was informed that our game plan is being changed yet again as far as transplant goes. The team of Dr.'s have opted to go ahead and do the second mini transplant so on the 23rd when Benny goes into the hospital it will be for five days just like this last time. That means that his big transplant is pushed back to the very end of October. The reason they had originally decided he didn't need the second mini was because he has already had quite a bit of the two kinds of chemo they are going to use, topotecan and cytoxin. Now they have decided since those two drugs worked so well in killing the cancer and since in transplant the amount is much greater. 6 times the amount of topotecan and 4 times the amount of cytoxin will be given in hopes of if a little worked a lot will work better to give us a better chance of killing anything we can't see. Until then Benny has been given until the 21st off. No appointments no clinic, nothing he just gets to be a normal kid.

Friday, September 3, 2004

Benny is feeling better. He has tomorrow off of clinc and Monday too. His counts are on the rise, and all is going well. Provided nothing happens before I will be updating after Conrad makes his grand entrance and will post pictures then.
Take care and have a great weekend.

Wednesday, September 1, 2004

Benny is not feeling well nor is he sleeping well. He cries out and moans a lot. He had a headache today and his bum is hurting him. He has been having low grade fevers nothing above 100.7, but he gets a fever and then it goes away by itself just to come right back a few hours later. He is covered in bruises and looks just pitiful. He has already gotten platelets twice and one round of red blood cells. He is still getting antibiotics daily, which is why he hasn't had to be admitted. The rules are different in BMT versus regular clinic. If he were still in regular clinic he would have been admitted yesterday when he got the fever, but Dr. Graham says there is no need since it's a low fever and he is already on antibiotics. He said if his fever goes up we will add Vanco. He started Neupegin Monday so hopefully his counts will come up fast so he will be feeling better very soon! Probably not until the weekend. Just in time for his baby brother to be born. Sept. 6th is the day I am being induced, coincidentally Labor Day and also my Grandma Dory's birthday.

Saturday, August 28, 2004

Hello everyone.
Benny has clinic this morning and will be getting platelets and red blood cells as well as the antibiotics he has been getting. Dr. Graham said if he gets the blood products today then he can have tomorrow off and not have to go into clinic. I will just give him the antibiotics at home because they won't need to check his counts. He starts neupegin on Monday and that will help his white blood cell count start to rise. They are waiting because they want to make sure the stem cells they gave him last Monday have a chance to start working their magic before they interfere. Benny has been feeling good and eating fine. He was a little pissy yesterday morning because he wanted to stay home and play not go to the hospital AGAIN. That is why Dr. Graham is giving him Sunday off.

On another note yesterday Jeremia was playing in his room and Derek went to check on him and found him lying in bed with the pillow over his face crying. When Derek coaxed him out from under the pillow he found the source of Jeremia's distress was a head full of silly putty. Jeremia kept sobbing "I didn't know it would stick", poor guy. Anyway Derek brought him to me asking how on earth we were going to get it out. Jeremia obviously freaked out when he realized it was stuck and in his frantic attempt to get it out only made it worse causing him to have these huge clumpy dreadlocks. To cut them out would have left 4 rather large bald spots. If he hadn't just started school I might have cut them out, but I couldn't send him to school half bald for his new classmates to pick on. I had heard peanut butter works on gum and figured gum and silly putty are close enough so I gave it a try and sure enough lots of peanut butter, some patience and about an hour and poor Jeremia's hair is back to normal, and he swears he will never put silly putty in his hair again. What a goober!

Thursday, August 26, 2004

We just got home from our daily clinic visit. Benny is still doing good. He is neutrapenic, but so far has been feeling fine and eating fairly well. He hasn't needed any platelets yet, but will eventually. We are just taking it one day at a time and hoping everything stays nice and boring.

Monday, August 23, 2004

Benny got his stem cells today and man did they make him stinky. The kid reeks. He smells like curdled milk or rotten meat or something equally gross. The stuff they use to preserve the cells causes this odor. WoooWeee, it is supposed to last until Wednesday. I thought chemo stunk. His counts are low, but he is doing fine. He gets IV antibiotics in clinic every day. He has plenty of energy and is as feisty as ever.

Saturday, August 21, 2004

Well the amazing Mr. O returned home today from his mini transplant. He has very little appetite, and had a few aches and pains in the hospital, but as usual has handled it all like the super champ that he is. His counts are still up but by Monday or Tuesday they should be 0. He has clinic 7 days a week now and will be getting antibiotics everyday to keep all of the ickies away. Dr. Graham says he should be able to stay out of the hospital until the big transplant in mid September. Benny is happy to be home and his first words were "Mom I'm home from the hospital can I watch Jeremia open his presents now?" So that is what we did. Jeremia opened his remaining presents and now they are playing with cars and transformers and all sorts of junk. Thanks to everyone who sent cards for Benny while in the hospital and cards to Jeremia for his big 5th b-day.

Wednesday, August 18, 2004

Today was the first day of chemo, yesterday was just hydration. Benny is all puffy from all of the fluid, but it is serving a very good purpose. Without all of the extra fluid his kidneys and bladder would take a much bigger hit than they are already. He is still feeling fine, which I wish would last, but I know better. He is however already starting to get the horrible chemo stink. The xray yesterday showed that his central line has slipped a little but not enough to worry about. The surgeons are not concerned at this point and don't think he needs it stitched or replaced. There is a 3 year old little girl next door that has Neuroblastoma too and she is just starting her month long stay. Dr. Graham says Benny's month long stay will be mid to late September.

Tuesday, August 17, 2004

Benny is in the BMT ward now. He had an x-ray a few minutes ago to check his central line. I am afraid it is starting to come out. They ordered the x-ray to see if it is or not. He has to have another EKG today the hospital lost the two he had the week before last. That really irritates me, but what can you do? Benny is feeling and doing fine. I spoke to Dr. Graham (the BMT Doc.) he said Benny will be getting 4 to 5 times the chemo he was getting over 3 days time. In other words his poor little system is going to get pounded way worse than before. The BMT unit is way different of course. Everything is depressingly sterile with good reason, but still kind of intimidating. I know that we aren't the first to go through this and unfortunately we will not be the last, but I am still petrified. Benny is such a trooper he keeps amazing us and I am sure he will continue to do so, but worrying is what I do best. Have a great day everyone and I will update as soon as there is something to update about. :)

Saturday, August 14, 2004

Benny doesn't start chemo until Tuesday now. That works for me because now I can see Keegan and Jeremia off to their first day of school, but it also means that Benny will definitely be in the hospital for Jeremia's Birthday on Friday. My poor boys. All three of them have to compromise so much and have no say in the matter. All things considered they are handling it great, but I still worry about the long term effects all of this will have on everyone. A mother's worrying is never done, especially when you are a cancer mom.

Friday, August 13, 2004

I have seen this before on other CK sites, but it really hit home today so I thought I would share it with everyone.

“The Strength of an Egg”

Parents of children with cancer are often referred to or viewed as having "strength like a rock". Albeit flattering it is not quite true. It is more like the strength of an egg. An egg you ask? Yes!
If you'll think about it, you'll see my point.

An egg has a polished, smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be
as smooth or solid.

Most children, at some point, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an even
slightly different angle, will break. The contents, once so neatly concealed, will come spilling out. The no-longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength.

A rock, on the other hand is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside but more rock. It takes a lot more than pure hardness to hold the "HAND OF HOPE".

Parents of children with cancer are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. "Balancing an egg" while running a household,
going for doctors' visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed!

Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of children with cancer will pick
themselves up and put themselves back together again.

Thursday, August 12, 2004

I just thought I would update and let you all know that there isn't anything to update =) I know most of you check daily and appreciate something new to read. We went and got Keegan and Jeremia yesterday and all three brothers are happy to be together again. Benny really missed them. Benny had the last of his scans for the week. I have no results yet. Chemo starts Monday for the first round of transplant. I am told that most parents are blown away by how sick their kids get. Benny got pretty sick with his very first round of chemo and I am afraid to think how much worse it could possibly be, but I know we are going to find out soon enough. The sooner we start the sooner we can put this all behind us and hopefully some day pretend to be normal again. On top of chemo starting and school starting Jeremia’s birthday is next week. I still haven't had a chance to go shopping for him yet. I will have to do it this weekend just as soon as we figure out what to get him. He wants everything he sees on TV and can even recite some of the commercials. Oh well that is all for now. Take care everyone.

Saturday, August 7, 2004

Benny is home! They sent him home yesterday. To look at him you would never know that less than a week ago he had surgery. Next week is full of testing. More CT's and junk. The following week he starts transplant. He will be in the hospital for four days getting chemo, then he will be sent home for two days and then he will be given his first batch of stem cells. We will have to go to clinic every single day even weekends to closely monitor him and his counts. Busy, busy, busy!

Update Thursday, August 5, 2004

It took some fighting, but Tuesday night I had the doctor remove Super Benny's epidural. It seemed to be causing more discomfort than pain relief and the site looked icky. Sure enough when I finally convinced the Doc to remove it, he said I was right that the medicine was just pooling up under the skin numbing a small part of his back. He seemed to feel much better after that. He broke out in a rash several hours later right around the time we gave him some morphine. We took off his gown to make sure it wasn't that and just watched him. After another round of morphine in the middle of the night he still had it and it looked like it was getting worse. It was decided that Benny might be allergic to morphine so he was switched to Tylenol with Codeine. He took that twice and then broke out in a bigger rash. He might be allergic to Codeine too. We cannot find anything else that could be causing the rash. While the doctor's were trying to figure out what to try next Super Benny proclaimed that he no longer hurts and doesn't want any more medicine. I didn't believe it was possible for him not to be in pain so soon after, but his blood pressure is perfect and the only time he seems uncomfortable is when he has a gas pain.
They took his NG tube out yesterday and today as long as he eats and keeps it down he can go home tomorrow. Now I knew my Benny was tough and strong, but he never ceases to amaze me! He had MAJOR abdominal surgery just three days ago and today he is talking about walking to the playroom, which we are going to do after lunch. He is as tough as they come.

Tuesday, August 3, 2004

Benny's surgery went great! A HUGE thanks to Dr. Greenfeld and his team! It didn't take as long as they had anticipated and there were no complications. The tumor was smaller than a golf ball and was only attached to the left kidneys ventricle. His spleen, aorta, and pancreas were all unattached. They are sending the tumor to pathology to see how much is scar tissue and how much is tumor. Benny may have a few remnants of tumor left but not much. If there is anything left the chemo he gets from transplant should knock it out, and then they may give him radiation to the kidney's ventricle just to be sure. He is resting now. We spent yesterday and part of today in ICU, but he is doing so well they just transferred him to the regular floor where he normally stays and he seems more comfortable with his surroundings. He is aware and stares at the T.V. but has no interest in talking. He has a NG tube in his nose going to his stomach, and it's uncomfortable to talk with a tube down his throat.

I want to take a sec to thank my Mom for coming down and watching Jeremia and Keegan so Der and I could focus on Benny. She has been very supportive and helpful with them since day one. I also want to thank Kathi and Carol for their continuous support and visits. They always come and spoil us. A big thank you to my two dads for caring and calling and offering their support in any way they can. Thanks to the best Grandparents anyone could ask for Grandma Chris and Grandpa Howard for their support and understanding! Finally thank you to all of the people whom I have never met, but consider my friends who check up on Benny and send us their support and to all of the Chemo Angels, you know who you are, and you ROCK.

Take care everyone!

Thursday, July 29, 2004

We just got back from meeting with Dr. Greenfeld, the surgeon who did Benny's biopsy and is performing the tumor resection. There are tons of risks that come with this surgery. The tumor isn't wrapped around the aorta anymore, but it is attached to it and it may be attached to his spleen and kidney. The surgery is going to take 6 to 12 hours possibly longer. Benny will spend the day after in ICU maybe longer so they can monitor him closely and then about 5 days on the normal floor. The doctors keep wavering back and forth about whether he will go directly from that to transplant. It's been the same since day one. Trying to keep up with the ever changing game plan is nearly impossible. As usual we will know when we know.

Tuesday, July 27, 2004

Clinic went well. Benny had some professional pictures taken for some advertising. He is becoming a regular star. I went to the OB and he did an ultrasound and said that the baby is huge he is already 5 pounds. I knew he was big and kept telling Der, but he thought I was crazy. Anyway the doctor is going to induce me two weeks earlier than my due date to avoid birthing an eleven pounder. He said that if he made me wait until the 20th the baby would be at least 10 lbs. I know I have big babies but that is pushing it for me. I thanked him for not wanting to see me suffer any more than necessary.
I wasn't sure if they would send Benny home in between his recovery from surgery and his first transplant. I figured they would probably just keep him straight through, but I found out that he will be sent home in between. He will have to go through some more tests I guess and they also want to make absolutely sure he is fully recovered from the tumor resection before they start pumping him full of mega dose chemo.
School starts for Keeg and Jeremia on the 16th and Jeremia's birthday is August 20th. Poor Conrad and Jeremia's birthdays are only going to be separated by about two weeks.
I keep saying how busy the next few months are going to be, but I still can't believe how many different things are going to be happening at once. That is the way it always works though.

Sunday, July 25, 2004

Well we are home and we had a great time. We stayed at the Bahia with a great rate (Thanks Aunt Sandy). We went to Sea World, San Diego Zoo, the beach, and to the car and airplane museums. We had fun, relaxed, ate a lot, and left our cares behind. The weather was awesome. If we could bring anything back with us it would be that. I have posted a bunch of pictures on the other site. www.wildpetzfamily.com check them out. I have a lot of catching up to do. I checked my e-mail and had over 100. Back to business. I will update tomorrow after clinic.

Friday, July 16, 2004

Benny's stem cell harvest was successful. They have plenty of good cells. They have given us the OK to go on vacation, but didn't give us a whole lot of time to prepare. We leave this Tuesday for San Diego. I have been trying to find a hotel that is not booked, but I am not having any luck. Everyone assures us that if we go and just walk into a few hotels we shouldn't have any problems finding one. I just don't want to get stuck in a flea bag or stuck paying some outrageous amount, but come hell or high water we are going! We need a vacation. We all have earned it especially Benny. Next week is the only chance we have to go anywhere. Derek is in Vegas for work on the 27th and 28th, Benny has an appointment with the surgeon removing what is left of the tumor on the 29th and of course surgery is Aug. 2nd then one week for recovery and then time for transplant. They will divide the transplant into three parts the first two are small and the third one is the doozy that he will be in the hospital for the longest as I have said at least a month. Anyway for one week we are going to do our best to party it up and spoil ourselves and forget about Cancer. I will update and let you all know how it went and hopefully post pictures.
TTFN

Wednesday, July 14, 2004

Benny's bone marrow biopsy was today and it went fine. Jeremia and Benny spent the afternoon painting and playing with playdough and silly putty. All else is fine. Uneventful is good. We are in clinic on Friday for the first harvest. It is supposed to take about 3 hours. That is all for now. Have a great day!

Tuesday, July 13, 2004

This is going to be a very busy few weeks, not that we aren't already busy. We are going to be even busier. Tomorrow is Benny's Bone Marrow Biopsy. Thursday is my cardiologist appt. They start harvesting Benny's stem cells this Friday and then again on Monday and possibly again on Wednesday. Then the Monday the 26th I get another ultrasound to check on Conrad. Tuesday and Wednesday Der is in Vegas. The 29th Benny has a consult with Dr. Greenfeld to discuss his surgery on Monday August 2nd. Then probably Benny will be in the hospital for at least a week recovering. Then vacation if we are lucky, if not direct to transplant. Also Keegan starts Junior High and Jeremia starts kindergarten the 16th of August and I have to get them both set up and registered on the 9th of August. Before that I have to get them school clothes and supplies. It should be a fairly chaotic few weeks ahead, but all for the good.

Monday, July 12, 2004

Benny is home! I know it is better to be safe than sorry, but having Benny locked in a hospital room all weekend truly was a waste. He felt great the whole time and became quite restless and ornery from pure boredom. Jeremia and Benny are currently sitting at the table playing with play dough and Keegan is watching TV. We are all happy Benny is home. Derek has to go Las Vegas the 27th and 28th for work. Benny isn't getting any chemo between now and then so hopefully Benny will stay out of the hospital. I don't know how I would manage without Der.

Sunday, July 11, 2004

Benny is feeling good. Happy and hyper. His counts are still rising and his cultures have grown nothing. If all stays the same, Doc's say he can come home tomorrow. I sure hope so. I think he should have been sent home yesterday, but I am not in charge.
All else is well. Wed. is his bone marrow biopsy.
As usual I will keep you updated.

Friday, July 9, 2004 9:52 PM CDT

Well, after a bit of a scare in clinic today, Benny is in the hospital. We went to clinic today just like Wed. and Thurs. for counts. His counts are rising, but he needed platelets. Benny was a little crabby and felt warm to the touch, but didn't have a fever. Lucy, his nurse, hooked him up to a blood pressure machine to take his blood pressure every 15 minutes, which is standard when they give platelets. Benny was given Tylenol and Benedryl which is also standard. The Benedryl made Benny sleep, he usually puts up a fight against the sleepiness Benedryl causes, but this time went to sleep. His blood pressure kept reading low and it was making the Doctor's and Nurses nervous so they were all hovering. Then it was decided that Benny's dropped so low that he was in shock, so they pumped him full of 300 cc of fluid in about 15 minutes to raise his heartbeat. This worked, but the trade off was it flooded him out and his lungs got fluid in them, and he had to be put on oxygen. He was a few seconds away from ICU, but managed to recover quickly, thankfully. He is now on 3 East which is where he normally resides, feeling fine and eating like a little piggy. We don't have any idea why his blood pressure decided to plumet maybe he just likes to make sure we are paying attention every once in awhile. They took a culture of his blood to see if he is growing anything. Like I said his counts are on the way up so he probably won't stay long provided he doesn't grow Staph. I will update when we find anything else out. Next week he is scheduled for another Bone Marrow Biopsy and if this one comes out clean like the last one did then harvest time.

Thursday, July 8, 2004

We just got back from clinic. Benny's blood and platelets were ok yesterday, but they wanted to check them again today. No results yet. Benny's energy level seems good so I doubt he needs any transfusions, but I will know for sure in a few hours. If he does we will just go back to clinic for a quick transfusion and then home again. While we were there today Melissa the Social Worker asked if it would be ok for someone from U of A to take some video of Benny for a commercial and a clip to be played on the big screens at the basketball games. She said they needed someone really cute and of course she immediately thought of Benny so we may be seeing him on TV soon. It's a commercial for raising money for research.

Wednesday, July 7, 2004

Benny is sprouting little black hairs all over his head, and his eyebrows are coming back, they are black too. We went to clinic this morning and are waiting to hear if we need to go back for blood or platelets. Benny doesn't look any more pale than normal and hasn't been too tired so I doubt he needs either yet, but I have been wrong before. Luckily so far he has been feeling good. I will update if anything changes.

Friday, July 2, 2004 4:07 PM CDT

Benny just finished his last day of five days of chemo. Next we wait for his counts to drop and then rise again. Once they rise we harvest stem cells. His tumor removal is scheduled for August 2nd. He will probably be in the hospital atleast a week for that. Then as long as the harvest of his stem cells aquires enough stem cells we are supposed to start the transplant process and atleast one month, most likely more, in the hospital. We are headed in the right direction.

Sunday, June 27, 2004 2:41 PM CDT

Hello all,

Benny is feeling good and happy to have his older brother’s home. They spent most of the weekend just playing with momentary stops for a fight or two. It is nice to have a full house again. The break was good, but call me a fool I always miss the chaos just a little. Benny eats more when Jeremia is around, because he sees Jeremia eating and of course wants some too. Chemo starts tomorrow and it is the same kind he had the last two times so Benny should do well, but there is always the chance that it will make him sick this time, I doubt it though. Any ickiness it makes him feel he usually does a great job of fighting through. What a little man! He is a pleasure to be around!

Here is a story I found on a recent angel's site www.caringbridge.org/il/caitlynbussie/ and I had to add it here.

The Chosen Mothers
by Erma Bombeck


Most women become a mother by
accident, some by choice
and a few by habit. Did you ever
wonder how mother's of
children with life threatening
illnesses are chosen?

Somehow, I visualize God hovering
over earth
selecting His instruments for
progagation with great care and
deliberation. As He observes, He
instructs His angels
to make notes in a giant ledger.......

"Armstrong, Beth, son, patron saint Matthew"
Forrest, Marjorie, daughter, patron saint Cecilia"
Rutledge, Carrie, twins, partron saint Greard."

Finally, He passes a name to an angel and says, "Give
her a child with cancer." The angel is curious. "Why this
one, God? She's so happy."

"Exactly," smiles God, "Could I give a child with cancer
a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel,

"I don't want her to have too much patience or she will
drown in a sea of self-pity and despair. Once the shock and
resentment wears off, she will handle it."

"I watched her today," said God. "She has that feeling
of self-independence that is so rare and necessary in a mother.
You see, the child I'm going to give her has it's own world.
She has to make it live in her world and that's not going to be easy."

"But Lord, I don't think she believes in you," said the angel.
"No matter, I can fix that. This one is perfect. She has just
enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child
occasionally, she'll never survive. Yes, here is the woman I will bless
with a child less than perfect. She doesn't realize it yet,
but she is to be envied. She will never take anything her child does for
granted. She will never consider a single step
ordinary. I will permit her to see clearly the things I see....ignorance,
cruelty, prejudice....and allow her to rise above them."

"And what about her patron saint" asks the angel, his pen poised in mid-air.

God smiles and says..."A mirror will suffice."

Thursday, June 24, 2004 1:36 PM CDT

Benny is doing fine. He is scheduled for outpatient chemo next week, and then when his counts bounce back they are going to harvest his stem cells in preparation for the transplant. Shortly after they take the stem cells Dr. Greenfeld will remove what is left of the tumor.

Friday, June 18, 2004 2:57 PM CDT

This feels like an inadequate way to share the news I have. I feel like I should be screaming it from the rooftops, or announcing it to everyone with a megaphone or hiring a sky writer, but I suppose this is the most practical way to share the news. Benny's bone marrow is CLEAN!!!!!!!!!!!!!!!! Even typing that makes my eyes well up with tears, the good ones for a change. CLEAN CLEAN CLEAN, what a beautiful word! One more time...CLEAN! OK so what now. His bone marrow samples have been sent to California to be tested for specific antibodies. What we do next depends on if his marrow has the antibodies or not. We should get results on that test next week, at which time we will sit down with Dr. Bagatell and discuss our game plan. If there are antibodies we will have two choices one give another round of chemo just to be sure, or two go ahead with the transplant and hope it works. If the bone marrow comes back without antibodies we will prepare for transplant. I do not have full details about what may or may not happen in both scenarios yet, but either way the news that the marrow is CLEAN from Neuroblastoma cells is GREAT! Also I found out what tiny means in regards to his original tumor. Tiny = centimeters. Which is also wonderful news because that means it is REMOVEABLE! We will be making plans for that sometime next week. All we have to worry about right now is how to celebrate our unbelievably wonderful news. I asked Dr. Bagatell if it could be any better than this and she said "Yes, when she gets Benny's High School graduation invite in the mail." I told her to count on it.
We know we still have huge hurdles ahead of us and that we are nowhere near the end of this battle, but we have come a long way and are heading in the exact direction we need to be, and for that we are GREATFUL!

Thursday, June 17, 2004 6:33 PM CDT

Just a quick update. After a lot of schedule changing and confusion. Benny's bone marrow biopsy took place today just a few hours ago, so of course I have no news on that yet. Dr. Bagatell said she would call us tomorrow with preliminary results, but she did have news for us today. His bone scan that he had on Tuesday came out clean. That means the cancer he had in his hips is GONE! Bone scan and bone marrow biopsy are not the same thing bone marrow biopsy checks for cancer in the marrow bone scan checks for cancer on the actual bone. Also his MIBG scan (that is the scan that checks his entire body for any specks of cancer using radioactive dye) he had yesterday came out clean except for the smallest little glow where his original tumor is. Dr. B says that the tumor is now tiny. Whether or not it is operable yet I have not been told but when I speak to her tomorrow I will ask. Fingers are crossed that the news about the biopsy is just as good as the rest of the news we have been told. Still nervous, but cautiously optomistic. Never can let the guard down.

Monday, June 14, 2004 4:21 PM CDT

Everything is going fine. I have not seen the CT results or compared them to the last CT yet, but when I do I will let all of you know ASAP. Sorry I have not updated in almost a week. I have thought about it, but nothing is going on. Benny is enjoying living like an only child, but misses his brothers at the same time. Much like I am enjoying an unbelievable quiet house for a change, but can't wait to see all my boys together again. Benny has been feeling fine. His appetite hasn't been as good as I would like it to be and he gets tired out quickly and has even been taking an occasional nap or two a day. I am keeping my eye on that to see if it gets worse or improves. I am glad he is getting plenty of rest but a little concerned since he normally refuses a nap even when sick. He is a very stubborn little boy and normally fights sleep with everything he's got. Our sleep schedules are all wacky. I think that Der and I are in for a boat load of trouble when the baby is born because he is a night owl. Sleeps all day with an occasional squirm here or there. At night he moves so much and kicks so hard it is a wonder I ever fall asleep. He's wide awake and ready to party.
Der is going with us on Wednesday since I am afraid I am going to be a nervous wreck. The soonest I think we will know anything will be Friday. If it is anything like the last two times, the sooner you hear the worse the news so I will be just fine if they take a week or two to give us results, that is of course as long as it is good news.

Wednesday, June 9, 2004 5:18 PM CDT

Benny is feeling fine. Still on Vanco. He has a CT tomorrow to check the size of his tumor in his belly, and then after that clinic for counts. Next Wednesday is the bone marrow biopsy that I am petrified about. I am trying to have a positive outlook but I can't help but be afraid. A mother's worrying is never done, especially in situations like this one. I am just going to try my best to turn my brain off until Wednesday and then I will just be a basket case the one day instead of for a full week. As always I will let you know when I know.
Have a great day.

Monday, June 7, 2004 4:01 PM CDT

We are home. They sent Benny home earlier than expected. Benny is on Vanco until the 11th and we go to clinic on Thursday. His counts are good so they said be free go home. We love home.

Sunday, June 6, 2004 3:22 PM CDT

Benny is still in the hospital. It is a Staph infection, so of course he will stay there for several more days at least. He is feeling good. He isn't allowed to leave his room, but he does a pretty good job of staying busy and plays with toys we brought from home. He never feels sorry for himself he just takes it all in stride. He blows my mind.

Thursday, June 3, 2004 11:46 PM CDT

Benny's fever is gone and he feels better. He still has the painful butt blisters and cries when we change his pants. I am quite sure we will be here until next week. We don't have any results from his bloodwork yet.

Wednesday, June 2, 2004 7:10 PM CDT

I took Benny in to clinic today to get red blood cells. He was super cranky, pale and tired, typical signs he needs blood and sure enough his counts had dropped significantly just overnight. He goes back tomorrow for platelets. We spent all of today at clinic. Melissa, the wonderful social worker at UMC, arranged to have a massage therapist come just for me. Halfway through my wonderful massage, I started to feel faint and I told the lady I felt like I was going to pass out, and then before I could do anything about it...I did pass out. Just for a second I think I drifted somewhere in between for what seemed like forever but I am sure it was less than a minute. Of course I was swarmed by doctors and nurses who promptly reclined me in a chair with my feet up and a cold towel on my head, took my blood pressure and stuck my finger for a blood sugar test. Both my blood sugar and blood pressure were just fine. I have an appointment with my OB tomorrow, and had already planned on telling him I have been feeling faint, but this is the first time I actually passed out. By the way if you ever decide to pass out...the hospital is the perfect place...just an FYI. Anyway Benny was sitting there the whole time quiet as can be and then one of the nurses noticed he had huge tears rolling down his face and then I said Benny its OK Mama is just fine. At that point he broke into uncontrollable sobs. Poor little guy, I scared him so bad and he sat there so quiet until he heard my voice. It took about 20 minutes and a handful of jelly beans to console him. Other than giving my baby a heart attack today went pretty smoothly. Benny got his blood and like I said goes back tomorrow for platelets. He does have some nasty looking blisters in his diaper area so they did a blood culture. He always gets a rash when his counts are low but this is much different looking. Hopefully it is nothing, but just to be safe they are testing his blood for yuckies. I will let you know how clinic goes tomorrow.


Update June 3, 2004 12:55 AM

Benny got a fever of 101.2 which means he went straight to the hospital direct admit. His butt blisters are getting worse and have the doctors perplexed. They have ordered a full work up of his blood like they always do when he gets a fever. He will be in the hospital for atleast a week probably more. They are afraid it might be Staph and when you get a Staph infection they don't let you go anywhere for quite a while. I hope it isn't Staph. I hope it isn't anything that will put up much of a fight. I hope it clears up quickly with the cream and antibiotics. It seems like these days so much of my life and thinking starts with the words "I hope", but that is all I CAN do.

Tuesday, June 1, 2004 12:10 AM CDT

Just got back from clinic. No results on his counts yet. He is feeling good and actually didn't want to leave the hospital. I am glad he isn't afraid of the hospital anymore, but it is sad to see him like it. I know he likes it because everyone is so nice and they have lots of toys, and for that I am thankful, but to have your child look forward to going to the hospital and not wanting to leave feels strange to say the least, but it is far better than him dreading going there.

Friday, May 28, 2004 5:14 PM CDT

Yahoo! Benny gets a three day weekend with no hospital or clinic. Back to clinic on Tuesday for a quick blood draw and then again on Thursday. Then the testing the following week. Then results the week after that. And then we will know what our next step is. Right now he is feeling just fine and his counts are still good and should be through the weekend then they will take a dive, but hopefully this time NO FEVERS or anything else that would make him stay in the hospital.

Wednesday, May 26, 2004 4:40 PM CDT

WooHoo! The big 3! Benny feels just fine thank goodness. He is enjoying his birthday even though he spent most of it in clinic. They gave him a present, sang him happy birthday and gave him a birthday donut with a candle to blow out. Tonight he will have a birthday ice cream cone instead of a cake per his request.

Monday, May 24, 2004 6:43 PM CDT

Nothing new to report. Benny is feeling fine. He started chemo today, outpatient, and will get it all week then the second week of June is when they will be running all of the tests to see if we can prepare for transplant or not. We have decided to give him his birthday presents all week long instead of just one day since he has to spend most of the time this week at the hospital.

Thursday, May 20, 2004 4:20 PM CDT

Benny is scheduled to start his next round of outpatient chemo on Monday. He is feeling fine right now.

We went to Keegan's (Benny's oldest brother) 5th grade graduation ceremony today after clinic. Benny clapped and cheered for "his Keegy" Keegan received 4 ribbons for track and field 3 3rd place ribbons one each for Frisbee throw, 500 meter, and high jump. He received 2nd place in shuttle run. He also got a humanitarian award for participating in an after school community program that volunteers for various things to help wherever help is needed and a certificate for participating in the Science fair. Way to go Keeg!

I still have not decided what day we are going to celebrate Benny's birthday maybe all week. Who knows?

Wednesday, May 19, 2004 0:21 AM CDT

Benny's counts are great. That means he will most likely start his next round of outpatient chemo next week. The unfortunate part of that is next week is his birthday, but chemo can't wait. Hopefully he will handle it as well as he did the last round with no nausea.

Saturday, May 15, 2004 2:34 PM CDT

Benny is great. They sent him home today. We just walked in the door. He is thrilled to be back home.

Friday, May 14, 2004 11:49 PM CDT

Benny is doing fine. He is still in the hospital. Derek is staying with him tonight. What a good Daddy! Benny feels good and hasn't had fevers since the first day. I tried to convince Dr. Hutter to let him come home today, but he said maybe tomorrow or possibly Sunday. He said he wants to lessen the frequency of his antibiotics before he sends him home. Right now he is on two different kinds and gets one or the other every 4 1/2 hours. The Dr. doesn't want me to be overwhelmed. I don't see why he is still on antibiotics at all considering his blood cultures have not grown anything, but I suppose that I should be thankful that the doctors care enough to be so cautious. It's just frustrating to see your baby feeling fine but locked in a hospital room 24 hours a day. I want him to have as much freedom as humanly possible, not stuck in a room all of the time. He has already spent more time in the hospital as a patient then me, Derek, Jeremia, and Keegan combined. Children should be able to play and be free, healthy and happy. I know you all agree.

Thursday, May 13, 2004 3:02 PM CDT

Last night Benny got a mild fever so here we are at the hospital again. His fever shot up once we got here. They gave him red blood cells last night and platelets this morning. They are drawing his blood often for cultures to see what bug he has now, but as usual they probably won't be able to tell exactly what he has, so they pump him full of antibiotics just to be safe. We will be here for several days at least. He is doing ok except for the fever.

Tuesday, May 11, 2004 2:01 PM CDT

Benny is doing good and is still eating and has lots of energy. I still am trying to find out what his blood counts were yesterday, but the fact that they haven't called me is good because it means he doesn't need any transfusions yet. His CT scan has been canceled again. I was told that Dr. Bagatell wants to repeat all tests during the week of June 2nd. That is all of the tests they used to diagnose him in the first place. There are like six different test including the CT and bone marrow biopsy as well as the test where they put radio active die throughout his body and then they can see everywhere the cancer is.
Derek will have to take him to that since they won't let me anywhere near the room where they do it, at least with the CT they let me in until it's time to scan.
The boys' favorite babysitter, Nicole, is coming to watch them tonight so Derek and I can go out to dinner. This is the last week Nicole will be able to watch the boys since she is a counselor at summer camp, not that we normally go out very much, but it seems like you want to go out a lot more when you don't have a sitter.

Monday, May 10, 2004 2:14 AM CDT

Benny is doing fine so far. He never did throw up although he did stop eating for a couple of days. His appetite is coming back though. I hate it when he won't eat, but I can't say that I blame him. We went to Fiddlesticks on Friday and had fun. Today we went to the mall and Benny ran around in his superman cape with a seemingly endless supply of energy. I just waddled along telling him to slow down. As soon as we got home all three boys just went in there rooms and for about 30 minutes it was all quiet. If you have kids or have ever been around mine you know how rare those silent moments are. The weekend went by way too fast.
We will be in clinic for blood work tomorrow and Thursday and on Wednesday Benny will be getting the CT he was supposed to have last week. As always I will let you know when I know.
Love

Tuesday, May 4, 2004 11:52 PM CDT

Benny is doing fine. He hasn't started to get sick from the treatment yet, but he probably will by tomorrow or Thursday. We spend about 8 hours per day in the clinic which sucks but it sure as hell beats staying there for a week. Benny handles being cooped up in a tiny room for so long extremely well. Probably even better than me. He is just such a powerhouse! He ROCKS!
His birthday is the 26th and we are thinking about renting one of those bounce house things for the three boys to go crazy in. I am not planning a big party, but we will certainly have a big celebration for him with the five of us. His wish is our command! I can't believe he is only turning three...he seems so much older than that to me. He certainly has been through more crap than the average three year old.
We find out Thursday whether we are having a boy or a girl. My due date is September 20th. Then we can start buying baby stuff. Pink or Blue? Pink would be a nice change but I love my boys and would gladly welcome another.

I would like to take a second to thank a very wonderful man whom I have never met, but consider to be part of my family. From the first time he found out about our horror story he has kept up with us and signed the guest book with many kind words. The other day out of the blue we received a check in the mail from this generous man. He said he had won a helmet and sold it but felt guilty keeping the money for himself. This man, Steve Alexander, knows first hand what it is like when someone you love is struck with cancer. His wife has done her fair share of fighting the beast. Steve a.k.a. Dr. Dirt has the heart of an angel and I think he is awesome.
We are planning on buying Benny a Power Wheels Jeep or bulldozer for him to drive around. I know Benny will love it and I hope Steve thinks it appropriate.

May 6th
We had the ultrasound today and big surprise...it's a BOY!
I am excited, now it seems more real.

Friday April 30, 2004 11:16 pmCDT

This just SUCKS. I hate this. Benny's bone marrow results are back and as I am sure you have guessed the results aren't good. He still has Neuroblastoma cells in his marrow. After four rounds of chemo this is BAD. They are changing his treatment plan in a last ditch effort to kick this cancers ASS. They are going to try two cycles of two different types of chemo given simultaneously. These two chemo’s show good results in children who have relapsed and have particularly hard to kill Neuroblastoma. Obviously Benny hasn't relapsed because he never went into remission, but unfortunately he does have some stubborn cancer. On Monday he will start this new chemo, it will be out patient which means every morning for five days we will go to clinic for several hours while he gets his treatment. The good news about that is that we get to sleep in our own beds at night. I can't remember what the names of the two different types of chemo he will be getting, but if they don't work we are screwed. There are other treatments but it would be a case of deciding how much we want to put his little body through. In other words if this next step doesn't work then we will be looking at quality of life instead of quantity and we would be making him as comfortable as possible and enjoying what little time we have. I hope I am making sense...I feel like I am rambling. Simply put Benny still has a chance of surviving this monster, but it is not as big of a chance as it was before. I am scared shitless!
I know I am strong enough to stand up and fight for Benny, but I don't think I am strong enough to handle losing. I don't know how we will survive without a Benny, and I hope with my entire being we won’t have to find out.

Wednesday, April 28, 2004 1:02 PM CDT

Benny had his bone marrow aspiration (biopsy) today. He is super sore, but is doing ok. We will find out next week what the results are. He is scheduled to have his CT on Monday. I have asked repeatedly for them to schedule his biopsies and CT's for the same day since he has to be sedated for both, but they have yet to listen. To me it just makes sense to sedate him as little as possible, but I am not in charge. Benny's counts are really good now, so we are happy for that. Now he can go outside and go to the store with me. He hates being cooped up all of the time so when his counts are good we all try to get out of the house as much as possible.
I will let you know as soon as I get results.

Monday, April 26, 2004 2:21 PM CDT

All is going well. Benny is having some pretty icky allergies, but other than that he is great. We went to clinic today and he had his blood drawn for labs and was given a perscription for Zyrtec to help his allergies. My allergies are acting up pretty bad too. The air must be full of all sorts of yuckies.

Benny's bone marrow biopsy is scheduled for Wednesday which is sooner than I expected. I am anxious to find out if his marrow is clean. I sure hope so. It will take atleast a week to get full results. I will let you know how the biopsy went on Wednesday.

Friday, April 23, 2004 10:44 PM CDT

WE'RE HOME! We just walked in the door, Benny was sent home on antibiotics as well as the medicines he takes regularly. I have to take him to clinic on Monday for blood counts. His counts were getting low so he got platelets today. The antibiotic he gets (Vancomiacin) causes his cranium to turn beet red and gets hot to the touch, so we have to give him Benadryl 30 minutes before the Vanco. The good news is that he is not allergic to Benadryl like the Dr.'s originally thought. Benny is looking and feeling good!
So happy to be home :)
TTFN

Wednesday, April 21, 2004 9:46 PM CDT

Unfortunately Benny's blood cultures are growing some icky bug, but we aren't sure what it is yet. Since his blood counts are almost nonexistent he will be staying in the hospital until his immune system comes back or until the antibiotics get rid of whatever he has, whichever comes first? So we are looking at several days at the least, but I am betting we won't go home until sometime next week. Benny is in good spirits and doesn't seem to be effected too terribly by this bug. He does have an upset stomach and diarrhea but is not throwing up although he feels like he is going to at times. He has actually been eating and drinking pretty well. He is an odd bird when it comes to what he will eat. Like last night he had almost an entire bag of popcorn for dinner. Today he had a banana for breakfast and teriyaki chicken for dinner nothing for lunch though. At least he is eating something besides junk food not that I would stop him at this point what matters most is that he is taking in calories.

He is going to be child of the month in July on the Fight for the Cure website. http://www.geocities.com/cogdill2/fightforacure.html

That's it for now...back to the hospital.

Tuesday, April 20, 2004 2:23 PM CDT

Well I am just taking a second to write this before we leave. The hospital called and said the blood cultures they took yesterday are growing, so Benny needs antibiotics which means we will be staying most likely for several days.
They want to get whatever it is under control before his counts disappear which is rapidly approaching.

I will let you know more when I know more.

Monday, April 19, 2004 11:22 PM CDT

Benny seems to have caught a stomach bug of some sort. The good news is his counts are still decent. The bad news his counts are going to drop and Benny will most likely be having a stay at the hospital. If not tonight then probably tomorrow. We went into clinic for an unscheduled visit today. Dr. Bagatell made me promise to call her if Benny looked even a tiny bit worse. They pumped him full of fluids so he won't dehydrate, but since his counts are decent he won't have to stay unless he stays sick or of course gets worse. Poor babies tummy hurts and he gets so mad when he has to throw up. He doesn't cry when he throws up he just gets very angry.
I hope we are still home in the morning but if we are not I will try and post it asap.

Monday, April 19, 2004 11:35 AM CDT

Benny is feeling pretty cruddy so far today. He woke up throwing up. I gave him Zofran and he threw up again. Now he is resting on the couch kind of moany but no fever so hopefully it will pass and he won't have to go for a stay in the hospital.

I got Benny's song from the Song of Love people. They are truely wonderful and Benny's song is great, but I cannot figure out how to get it to play on either one of the websites I have tried everthing I can think of. I am frustrated and want to share his song with everyone.
If you have any thoughts e-mail me or sign the guestbook and I will give pretty much anything a try at this point.

Everyone keep your fingers crossed that Benny will feel better today. Poor guy, I hate it when he feels less than good.

TTFN

Saturday, April 17, 2004 1:18 AM CDT

Hello all,
Benny is doing well. Dr. Bagatell gave him a huge dose of Zofran on Thursday and another huge one today at clinic. It actually helped him to have an appetite. I highly recomend it. That is what I want him to get from now on. He has always gotten Zofran for nausea but much smaller doses every four hours this time he got 16 hours worth all at once which they have been doing for adults for a long time apparently but just started doing it for kids. It really works well.
Benny is ofcourse quick to tire out, but atleast he isn't throwing up.

Wednesday, April 14, 2004 9:15 PM CDT

This is day two of chemo and so far Benny is doing OK. It has noticably worn him out. He didn't even ask to go to the playroom for most of the day. He usually spends atleast four hours a day in there. He just feels run down. He is getting two different kinds of chemo this time and one of them is a platin. Platin's are harder on him than others. They make him feel yuckier and take longer to get over, so we are expecting it to make him pretty ill. We might get to come home tomorrow and then I would just take him to clinic on Friday for his last round. Dr. Bagatell is so thoughtful...she shuffled the chemo schedule around in order to let us go home on Thurs.
That is all for now...I must get back.
Thanks to everyone who signs the guestbook. I check it daily when I can and it really means alot to me that you take the time to let us know you were here and say such nice things. :)

Sunday, April 11, 2004 7:56 PM CDT

We are having a lovely Easter. The boys are getting ready to color eggs. Just waiting for the eggs to cool. We had a easter egg hunt. The Easter Bunny brought lots of fun things that the boys are enjoying. I took pictures of the hunt that I will post on the wildpetzfamily.com page.

I wouldn't wish this on anyone and given the chance don't think that I wouldn't give anything for everyone to be healthy and stay that way. That said I am thankful for how all of this has taught us not to take ANYTHING for granted. We enjoy the happy moments so much more now. We appreciate the smaller things that we never gave a second thought to before. So while I am sad at how we got to this frame of mind... I am glad to be joyful for the little things in life. I can actually feel my heart warm more often now than before. It is a wonderful feeling.

Things that mean more now......
Kisses
Smiles
Twinkling eyes
Hugs
Laughter
Tears
Silly moments
Talking
Listening
Running
Playing
Cuddling
Holding hands
Being able to leave the house as a family
Sleeping peacefully through the night
Watching them...grow, think, share, be thoughtful, use their imaginations
and love

Thursday, April 8, 2004 3:44 PM CDT

Benny had his clinic appt. today. I finally got to see his last CT scan. I never got to see the first one, but I was told by Dr. Bagatell that the tumor was much much bigger on the first scan than this recent one, like the tumor was reduced by atleast half. One of his lymph nodes right by the the tumor is fuzzy so the general consensus is that it probably has cancer in it, but that is not a new finding its been like that all along...it was just the least of their worries apparantly. Benny's next round of chemo is scheduled for Tuesday. I am glad we are going to be home for Easter. If I remember correctly this is supposed to be a short round 3 to 4 days.

Wednesday, April 7, 2004

Benny is feeling much better and so is his tummy. We went and bought a new vaccum today and he was so excited he thought we bought it for him, since he loves vaccums so much. The boys did enjoy playing in the box though. All of the boys are looking forward to Easter and can't wait to decorate eggs. What will I do with all the hard boiled eggs? You can only eat so many eggsalad sandwiches. Keegan is the only one who actually likes eating the eggs plain. Jeremia informed me today that even though he doesn't like regular eggs he does like the eggs with candy inside. He just had to clarify so ther was no confusion.

Monday, April 5, 2004 10:46 PM CDT

I took Benny to clinic today to get his counts checked and be seen by a Dr. We weren't scheduled to have an appt, but ever since his allergic reaction he has had diahrea, which I assumed had to do with the allergy, but wanted him checked out just to be sure. His counts are up which is very good and the Dr. agreed that it was most likely part of the allergic reaction and there isn't anything special they can do to make it better. Poor Benny's bum hurts soooo bad he cries when it needs to be changed. Hopefully it will be gone by tomorrow.

Sunday, April 4, 2004 4:08 PM CDT

Hello all! Last night was a bit scary. We were almost done eating dinner when all of a sudden Benny started screaming that his eyes hurt. It was really hard to get a good look because he had them squinched shut and was rubbing them. We assumed he got something in them so Der washed his hands while I got some wet paper towels to wipe his eys with. When I sat down to start wiping his eys, I saw these little tiny raised bumps under his left eye. Then under his eyes started turning purple and swelling up so much he could barely see. He looked like a boxer that had just lost. I called Dr. Whitecell (one of his peds oncology Dr.'s) and he said to take one of my Benadryl cut it in half, mush it up and get it into Benny NOW. He said I should call him back if that didn't work. After trying several different ways to get Benny to take this, I finally got him to drink it in a small amount of milk, but it wasn't easy. His head was covered with raised bumps and blotchy hives, and his eyes looked very painful. After a few minutes they got better. It took about four hours for him to look normal again. He was obviously allergic to something, but nothing was new. He had had everthing many times before. He was eating (more like playing with) chicken strips and french fries. The only logical explanation we can figure is that he had a reaction to a bite of daddy's crab. He has had crab many times before and absolutely loves it, but he won't be getting it anymore...just in case. When a healthy child has an allergic reaction to something it is bad enough, but when you are watching your Cancer kid 24 hours a day waiting for something to go wrong and his face starts to swell up it is a little more intense. You hope it's just an allergic reaction, but you have learned hardly anything is as simple at you would like it to be. Anyway he is fine and if this was the worst thing we ever had to deal with I would be greatful, unfortunately...I know better. I am just thankful his throat didn't swell.
All is fine now. He has clinic Thursday and will start his next round of chemo Monday 12th or possibly Tuesday. Then it will be bone marrow biopsy BMP again to see if it's time for stem cell harvest. While I feel better about the whole thing than I did I am still quite nervous.
TTFN

Thursday, April 1, 2004 12:53PM CST

Clinic was today and we met with Dr. Hutter to discuss bone marrow transplant. I am feeling much better about it than I was. It is still going to be REALLY hard, but I am confident it will go well. Dr. Hutter explained the procedure to us and answered my million questions. I am really excited because when Benny was first DX I wouldn't let Dr. Hutter tell me what his chances were for survival. I didn't want to let that control my mind because obviously the odds aren't in his favor, but through my reading and talking with other cancer parents I had come to find out his chances were most likely 20 to 30 percent. Today Dr. Hutter said with transplant and all things considered his chances of winning this battle are between 40 to 60 percent leaning more towards 40, but 40 is a hell of a lot better than 20 or 30 and the way I see it somebody has to make up the 40 percent of survivors...it might as well be Benny. He said those numbers have improved significantly just in the past few years. Without transplant his chances would only be 5 percent. Also I was really concerned about the chance of losing him through transplant but Dr. Hutter said that there is only a 5 percent chance of him not making it through transplant. It feels strange to have this new view of life. Having positive feelings that your child has a 40 percent chance of growing up sounds odd, but this is the life we are living. The hardest part is going to be the third transplant because by that time his body will be worn out from the high doses of chemo. That will be when we stay in the hospital for a minimum of 30 days so they can pump him full of preventative antibiotics. Dr Hutter agreed that the final transplant is going to be hell.
Currently Benny's platelets are low so tomorrow we go back to clinic for platelet infusion. Benny has been feeling well but has been needing to take more breaks to rest. The platelets should help that.

I signed Benny up in a program called chemo angels. It is a wonderful group that sends chemo patients cards and small gifts to make them feel special. Check it out either for your chemo kid or to volunteer to be a chemo buddy. http://www.chemoangels.com/
There is a new picture in the photo album.


I want to take a second to thank everyone at the Cold Stone Creamery in Anthem, the staff at Kennedy School, and our cousin Tammi for raising money for Benny. You have been a big help and we are very thankful!

Thursday, March 25, 2004 9:10 PM CST

We are home and he is doing much better. We got the results back for his super sensitive bone marrow biopsy testing. They found rare cancer cells...rare means too few to count. The Dr. said when they find cancer cells in bone marrow they give you a number that is like a ratio of how many are there and when there are too few to do that they say there are rare cells. Why they don't just say a few or a small amount instead of rare is beyond me. Anyway that's really good news especially since the marrow was taken after only two chemo treatments. Next Thursday we sit down and meet with the transplant team to discuss his bone marrow transplants. I was told today that he was going to need three seperate transplants. Thankfully we have insurance!

Wednesday, March 24, 2004 10:07 PM CST

It looks like Benny gets to go home tomorrow. They were able to repair his line, thankfully. He is not feeling very well and the Zofran is not enough to keep him from throwing up so they are giving him Atavan (I think that's what it's called) it makes him see things. Like he was convinced that there was something in his blankets and was petrified it was going to get him so I had to spend a good portion of the day holding him. His sleeping schedule has gotten really weird. Last night he woke up at midnight and wouldn't go back to bed until like 10 this morning. His white blood cell count is already down to 1.1. I was told that his bone marrow transplant will most likely happen sometime in July. He will have a long stay in the hospital when that happens. Well I have to get back there so Der can come home and go to bed.

Monday, March 22, 2004 9:51 PM CST

Benny is doing well with this round of treatment so far. One of his tubie lines has a tear in it and the Doc's are going to sedate him tomorrw and try and repair it without completely replacing it. It was really hard to put in and they would like to avoid removing it and placing another. If Benny needs a new one this will be his third central line is as many months.

Friday, March 19, 2004 2:04 PM CST

Good news! The preliminary results of Benny's bone marrow show NO cancer. We still have to wait for the more extensive testing to be done, but the fact that they don't see any in the preliminary results means that it is better than it was. Benny is going to be admitted tomorrow morning to start his third round of chemo. This one will last five to six days atleast. I will try and keep you updated, but if I don't, don't fret it's just because we are at the hospital.

Thursday, March 18, 2004 11:26 PM CST

Benny's doctor says the tumor in his belly has shrunken significantly, but we are waiting for the surgeons to look at the scan and tell us if it is operable yet. His bone marrow biopsy was yesterday and ofcourse we have no results yet but Benny was ready to party an hour after it. When the results come back from that we will find out whether it's time to harvest his stem cells and also schedule his next round of chemo.

Tuesday, March 16, 2004 1:00 PM CST

We haven't talked to any doctor's yet, so we don't know the results of the CT. This was Benny's first oupatient CT, all of the other scans and test he has had when he was staying in the hospital. Benny goes in tomorrow for his bone marrow biopsy. There had been some miscommunication. I was told by on the nurse who called to set up the appointment that Benny was getting his spine accessed. That never made sense to me and when I was grilling the doctor she said that no Benny was actually getting a bone marrow biopsy, which makes much more sense. So tomorrow they are going to take the biopsy out of his hip just like last time. Anyway I can only assume that we will find out the results from the CT tomorrow. In which case I will post it here ASAP.

We have had lots of caring souls sign the guest book and e-mail us and I just wanted to take a second to thank you all and let you know how helpful it is to have all of these words of encouragement to read on a daily basis, thanks. :)

Friday, March 12, 2004 4:53 PM CST

Benny had clinic yesterday. They gave him a shot of chemo. It made him tired and a little cranky, but his counts are up which means I don't have to give him anymore neupagen which helps his whiteblood cells grow, but also makes his legs hurt. Everyone keep your fingers crossed that his CT on Monday will show that the tumor is now as small as we hope.

Wednesday, March 10, 2004 3:31 PM CST

Benny's clinic appointment is tomorrow, nothing special they just like to see him and make sure he's doing as well as I say he is. March 15th he is scheduled for a CT to see how much his abdominal tumor has shrunken...maybe it can be removed now. On March 17th he is scheduled to have his spine accessed they will be checking how well his bone marrow is reacting to the chemo. He is still active and feeling well, which is surprising because I am sick and thought for sure he would get what I have, but thankfully so far he hasn't.

Sunday, March 7, 2004 7:51 PM CST

Still feeling good! Hooray! Check out new pics in photo album.

Saturday, March 6, 2004 8:15 PM CST

Benny is still managing to keep the fevers away, thankfully. Jana, one of his homecare nurses, came today to draw blood and take a nasal swab for testing to see if he still has MRSA (staff infection). Hopefully that will come back negative so when he is in the hospital he will be allowed out of his room again instead of being in isolation, provided he is not neutrapenic. He is full of spunk, very matter of fact and bossy...I am not sure who he gets that from...hehe. It is heartwarming to see him happy again and we are enjoying every moment.

Friday, March 5, 2004 2:17 PM CST

Benny is home and happy, but he is neutrapenic (his immune system is non-exsistent). We have to keep him away from the public and the public away from him. He is in great spirits and appears to feel good, but the likelyhood that he is going to get a fever is very high, in which case we will go right back to the hospital. Right now we are just enjoying this happy Benny and hoping he doesn't catch any weird bugs.

Click here to go back to the main page.

----End of History----