Back in the Hospital (Hopefully only for a night)
By Margot | June 24, 2009
Laser Tag Fun -Joe’s Birthday
We were admitted again last night. Sam was peeing blood all day yesterday. He woke up with very red urine but otherwise feeling fine.  He went to science camp with Andrew and they had a great time.  Afterwards, Meredith and I had a picnic with the kids before I had to take Sam to his blood check. The boys all played tag and ran around. Sam had to go to the bathroom so I walked him over to the mens room at the rec center and he came out with a very stricken face.  He said, “Mom, I can’t get it to flush and it’s red. So I walked into the men’s room and sure enough the urnial was full of red blood. We tried to flush it but it didn’t work, there wasn’t anyone in there so I told Sam not to worry about it, no one would know it was him. That’s his main worry about the red blood – that someone will see it. He always asked before, “what if it’s red at school and someone sees? Poor guy. Not really what most eight year olds are worrying about.  After that though he went out and played with the other boys and ate a little lunch.  There was a moment in the bathroom as I was trying to flush the urinal that I was thinking what a crazy life we lead.  After lunch Andy stayed to play with Luke and I took Sam and Charlie to Sam’s blood check. We got the blood check and dropped off a urine sample and left. Thirty minutes later Gina was calling me back saying we needed to be admitted. Sam’s urine contained a lot of blood (obviously because it was bright red) and his platelets were only 31. He needed overnight hydration and a platelet infusion.  His ANC is a whopping 5 this morning but no fever. Knock everything you can find.  His urine is clear this morning and platelets are 115 thanks to the infusion last night. Thank you all platelet and blood donors. Thank you. Thank you. Thank you. They may let us out of here today though we are thinking we might see if we can leave him accessed and set up home health care to come and give him night time hydration for a couple of days.
He had a very good two days off from the hospital as you can see from the pictures Colleen emailed me last night, he got to go to Joe’s laser tag party and had such a good time. They beat the adult team they were playing against and were super excited. I guess it was really close. Colleen said the adult team came out all sweaty and tired and said, “They were tough.” Sam now wants to have a Laser Tag party for his birthday.
Charlie had dinner with Jake and Joe last night and Andy had dinner with Luke and Ashlyn and Catherine. Meredith took Andy home from basketball practice last night and Colleen took Charlie who piped right up at practice and said, “I’ll go have dinner at Jake’s house” after I’d said I was off to the hospital.  Thank you Meredith and Colleen for all your help yesterday.
 Neil spent the night with Sam last night and I got here around 7:20 this morning. Sam is still sleeping Neil said he beat him at Monopoly last night before the benadryl he gets before platelets kicked in. Neil said he gave his evil giggle every time Neil landed on his property. We have the awesome nurse Carole today and yesterday -she’s leaving to get married tomorrow -(congratulations!) and we had nurse Julie last night who we love. Joe may come in and see Sam today and hopefull we’ll be out of here. Since Sam doesn’t have a fever we won’t have to wait until his ANC is 500. Now we just need to keep him fever free. He had his peg GCSF shot yesterday after a small drama brought about by me. He was supposed to have it on Sunday but it comes an adult dose 6mg syringe so I’m supposed to transfer it to a smaller syringe and only give him 4mg. Well, I completely screwed up the transfer and tried to squirt the shot into the top of the other syringe instead of the bottom and then tried to put the plunger into the top which immediately squirted all of the medicine out.  I can’t tell you the sick feeling I had when that happened.  I knew it was an expensive shot. I found out just how expensive - $3200 – when I called to see how I could get another one. Anyway after a day on the phone with Cigna and TelDrugs pharmacy and finally Amgen telling my sad story, Amgen (the manufacturer)  agreed to a one time replacement for free . Whew. So he got his shot a day late thanks to me but we’re hoping it kicks in so he is not neutropenic for long.
Will let you know if we get sprung today.
Margot
Topics: Progress Reports | 8 Comments »
Home
By Margot | June 22, 2009
We got home yesterday morning. Sam woke up feeling good and had been fever free for 24 hours. We were all together for Father’s Day yesterday which was great. Neil got home at 3am on Friday night.  We took it easy for most of the day yesterday and then went to the park yesterday afternoon because that’s what the boys wanted to do for Father’s Day. We met Tom and Anita and Zack and Trevor there and we all played a little baseball and tag had pizza. Sam hit baseballs and he and Andy even played a little football with some boys there before the Svajda’s got there, not for too long though.   Then Neil was it for tag with all the kids. My mom was horrified at me for letting him play and it was a little surreal to see Sam out there catching the ball and thinking that he just got out of a hospital bed that morning but it’s what puts a big smile on his face and we laid in the grass in the sun for a while to rest. After we got in the car Sam said to Neil “That was an awesome Father’s Day Dad” and gave him a high five. Neil said that was the best present he could’vehad.  He’s on the couch this morning but wants to go to Joe’s birthday party tonight. His mouthsores from the hand foot and mouth thing have pretty much cleared up and he’s eating a little. Our big job is to keep him hydrated and watch his counts so we don’t end up back in the hospital.
We have a blood check tomorrow and will do a blood draw to be sent to Philadelphia to test for an ALK gene. The current plan is to go back to New York for scans on or around July 6th and then make our way to Philadelphia if possible on that trip. Not sure what if anything we still qualify for in terms of antibodies so we’ll find out after we scan.  Thanks to everyone for your help and support last week. It’s great to be home and see Sam feeling pretty good today and yesterday.
Margot
Topics: Progress Reports | 8 Comments »
still fevery
By Margot | June 20, 2009
Sam didn’t do any Cytoxan today. He had blood in his urine right before we were supposed to start it so we just did the topotecan infusion. His throat started hurting this afternoon and his fever got to 103.   The night nurse checked the oxygen machine after she saw his temperature which freaked me out.  He might have the hand foot and mouth virus which is going around. It would explain his fevers and mouth sores because it’s a little too early for chemo induced mouth sores. I think we’ll probably be here for a few more days. Â
Update : fever broke 11:00. He is sleeping peacefully.
Margot
Thanks so much Monica and Elizabeth for all your help today.
Topics: Progress Reports | 7 Comments »
Stopped Cytoxan
By Margot | June 19, 2009
We stopped the Cytoxan infusion today. Sam got about 1/2 the dose. He started peeing blood and we stopped it.  Soon after we stopped his urine cleared. I’m thinking it’s a good sign that there isn’t constant bleeding and that it’s clearing with hydration but still it’s not a great sign.  Dr. Willert thinks it might be clear enough to do the last 1/4 dose tomorrow.  She just called me at 9 o’clock tonight to talk about it and talk about a plan.  She made me feel better as I was getting pretty far out there on that ledge. We’ll see how his bladder does tonight and then either just to topo, do part of the cytoxan and all of the topo or try for the whole last 1/4 dose.
Sam had a good day before that. He and I built a bionicle and played some Uno. I just love his evil giggle when he makes me draw four. He played some of his video games and then Charlie and Andy arrived with Elizabeth. We had the playroom to ourselves for an hour since Sam has had a fever and hasn’t been able to go, the child life specialist arranged for him to have it to himself with his brothers.  They played a lot of air hockey. The child life specialist and the volunteers were laughing at Charlie who kept saying “Bring it On.” Then the art specialist helped Sam and Andy do a beautiful pastel picture. Kelly and Kennan brought me a birthday cake this afternoon and we all had cake. Then later in the afternoon Monica and Mac and Ty showed up with games and presents and the boys had a great time with them.  All of the nurses kept saying how crazy it was in our room and that it was the party room – it was our usual circus. Dr. Willert said he looks so great and aside from the bladder stuff is tolerating the chemo very well.   Sam was up playing blokus with Mac and Ty but right around the time they left he started to spike a fever and to feel crappy. Maureen came with cupcakes and we had a very nice time with her. Sam rallied to sing happy birthday and laughed at the relighting candles but really wasn’t up for eating the dinner we’d brought in and one bite of cupcake and I could tell he didn’t feel well at all. The nurse gave him some fennergin (sp?) which makes him sleep and he has been sleeping since. His fever broke and he’s all sweaty but I’m not going to wake him up to change him yet.
If I look on the bright side, less cytoxan might mean fewer side effects. If I look on the terrible side of things, less cytoxan might mean more disease and that of course scares me to death.  Neil has been out of town but will be back tomorrow night.Â
I turned 39 today but if you count cancer years like dog years which I do, I’m about 67.   Thanks to everyone for the phone calls and emails today. Don’t need to tell you my birthday wish. …
Margot
Topics: Progress Reports | 10 Comments »
Day One Down -Sam’s Starting to Feel Crappy
By Margot | June 18, 2009
We are in post-chemo hydration and Sam is just starting to feel crappy. His stomach hurts and his fever has spiked again. He was feeling good all day but around 3 o’clock started to get shivery and his stomach hurt. Right after I posted yesterday he spiked another fever and had a fever most of the night. Tylenol brought it down and then around 2am we didn’t give Tylenol to see if it would come down by itself and it did. I was hoping we would be fever free today but right around 3 o’clock he spiked again. We had a bit of drama yesterday. There was blood in Sam’s urine in the afternoon.  Since we are giving him Cytoxan which is very toxic to the bladder, Dr. Willert wanted his urine clear before starting chemo. We ratcheted up the hydration and kept measuring the blood in the urine through the night by this morning, his urine was clear and we started the chemo. So far today all urine has been clear but the latest collection just showed some trace blood. Crap. He was treated with Mesna and lasex so really hoping that helps. He has been so good about everything.   He asked me sweetly yesterday if he was going to get to play at all this summer and if he has to have chemo all summer could he please not have it on his birthday.  Then in the afternoon one of Sam’s school buddies whose mother I haven’t spoken to in a while, called on my cell phone and said, “We wanted to see if we could pick up Sam and take him to the fair with us.” It was such a nice invitation and I had to say, “Actually we are in the hospital starting chemo.”   Really probably not the excuse she was expecting. It really made me want to hit the wall because Sam should be going to the fair and instead we are pumping him full of toxic chemicals. Today Elizabeth brought Andrew up to play with Sam while Charlie had a playdate with Jett. They finished building the Indiana Jones lego set I bought together and played Mario Smash Brothers for a while. Elizabeth stayed with both of them for a couple of hours while I went home and got some work done – thank heavans for Elizabeth. When Andrew was leaving he gave me a hug and got kind of sad. He said, “Does this always have to happen?” Meaning the hosptial. I said, “No it doesn’t, but when it does we just have to roll with it, buddy. We make the best of it and make it as fun as we can.” Then Sam piped up and with a big smile said, “But sometimes we just have to cry, WAAA WAAA” he said laughing which made Andrew laugh.  So I need to take my own advice and take Sam’s lead because he takes this all so well. I don’t really know how.  Elizabeth came with Charlie last night while I took Andrew to his basketball practice and I tried to talk with Andrew about things in the car. I let him know we know it’s hard on him and Charlie too and he was good about it.
Kelly said that Charlie and Jett had a ball at the beach together today and that they were fearless. I’m glad he got out to have some fun.  Andrew has tennis tomorrow and then they’ll come up to the hospital.
So looking on the bright side, one of our favorite nurses Sheila stopped by to say hello today and she said she laughed when she heard we were admitted with a fever because it guarantees us a private room. Otherwise we very surely would have had a roommate because everything is full. So that is a good thing because new chemo, plus our whole clan and a roommate does not always make for fun. Sometimes you get lucky and get a great roommate and the kids hit it off but I’m liking the private room.
I promise not to be so dejected tomorrow.   Gotta go, we are watching the The Hulk and the bad Hulk has arrived. Seems we are into the scary stuff for the day, we just finished reading the entire American Chillers book we ordered for our stay here . Not much scares our Sam anymore.
  Please pray that this chemo does it’s job because Sam will certianly pay the price for it.
Margot
Topics: Progress Reports | 6 Comments »
School’s Out, We’re in the Hospital, Chemo starts tomorrow
By Margot | June 16, 2009
Sam and I are in the hospital today. The plan was to have a 10am blood check, an 11am doctor’s check and then come back this evening around 6pm for a direct admit, a full night of hydration and start chemo tomorrow. Of course we all know things don’t always go according to plan. Sam spiked a fever last night of 102 and Neil brought him for a direct admit since we were coming in today anyway and would have had to have a four hour emergency room stay for anti-biotics for his line.  We’ll be in for four days of chemo so through Saturday and now we just need to keep occupied. So far we’ve built some legos, played a sports hangman game a nice volunteer gave us from the playroom and Sam is now playing the hospital Wii.Â
He had a great last day of school. They did a field day and pizza party. I came by to give him pills and later to bring ice cream sandwiches for the class and he was out doing tug-of-war, he was the anchor for his team, then playing kickball and four square. He and Andrew came home and played for a while and then he went to basketball practice where he practiced the whole time, ran a suicide and made three shots in the scrimmage. He was really excited because he thinks they will have a good team this summer.  Last night at bedtime, he felt hot and we found he had spiked a fever. We got in our spaceship and blasted back to Planet Cancer and here we are getting hydration in prep for chemo. Sam is feeling fine and has no fever today at all. We’ve had a good timing goofing around this morning. I think the fever might be disease related. His platelets are getting hit. They are still nice and high (170) but he’s been running around 250 to 300 so the disease is eating up his platelets. Also right before he went to bed last night he said his leg hurt when he walked on it. So, as much as I want to say, “But he looks fantastic and is feeling so well and look at him run and play,” his numbers are beginning to tell the tale of an “impressive amount of disease.” His LDH today was over 1000.Â
Colleen just came and brought up some pills from home we forgot. Thank goodness for you, Colleen.  Thank you so much for all your help. Elizabeth is going to bring up Andrew and Charlie this afternoon and I’ll take Andrew to his basketball practice. He graduated from kindergarten yesterday and was so cute. He had a speaking part in the music program and he did it very well and very seriously and then he was a very animated singer. He did all of the moves so enthusiastically, it was about the cutest thing I’ve ever seen. I have it on video so now with the new version of Word Press I think I can post videos pretty easily. I was so proud of Andy and his teacher, Miss Sussman told me again what a joy he was to have in class.  Both boys had good report cards. Almost all of Sam’s grades were up which was great. He got pretty much the equivalent of all Bs which we are very happy with.
Charlie has equated the hospital with New York City. He was carrying the lego box I had bought for Sam around last night and said “Mom, we have legos, see the legos.” I said, “Yes, those are for Sam. He has to be in the hospital this week and he will get bored so we want to have something for him to do.” “Oh,” says Charlie, “I will get bored too when you bring me with you to New York City so I’ll do legos with Sam.” And then the rest of the night he kept saying, “You will let me come with you to New York City tomorrow and I will do legos with Sam.” I told him we were not going to New York City and that he will see me but he kept dropping little hints about him coming with us.  “When I come with you to New York City, we will play.” It was cute and a little sad at the same time.
So that’s all the news I have to report. I’m off to get Sam some lunch. Dr. Willert is helping us premedicate him with everything that can possibly help alleviate mouth sores, nausea, and other effects of high dose chemo.  We are giving him some supplements that will help as well. I’ll keep you posted as to how things are going.
Margot
Topics: Progress Reports | 10 Comments »
The Plan
By Margot | June 13, 2009
Sam and Mom in front of UFO Schwartz
Before ride around central park
Top of Empire St. Bldg. -Dad too chicken to get near the edge 😉
Sam and The Adorable Oliver
Sam and Dad with Andrew and Ian after Clue
Charlie nearly too big to fit in his little car
Andy being Andy at the park
We have decided we are not ready for ICE. We are going to do TCV: Topo/Cytox/Vincristine nasty enough in itself but perhaps not quite as nasty as ICE. Dr. Modak wanted to do a couple of rounds of ICE but what we will do is try TCV first. If Sam doesn’t have a good response, we’ll switch to ICE. We are going to scan again in three weeks. Sam will be inpatient for the infusion. He is going to need a lot of hydration due to previous bladder damage. He still pees blood every now and then when he is not well hydrated.  His CT showed “a thickening of the bladder wall” which we knew – damage from Cytoxan so we need to be very careful . He’ll be premedicated with Mesna which protects the bladder and on continuous hydration. We do not want to be in the position where we can’t do any more chemo before it has a chance to take effect.  We are still shooting for 3F8s if we can but we’ll take it one day at a time and see how it goes.  He is feeling well, complaining a little of tailbone pain but it seems to be controlled with Tylenol. He went on his field trip on Thursday to Old Town and then got his cast off after school.  He was very happy about that development and is now in a splint that he can easily take off.  He had a good day on Friday and was happy to be back at school. I’d let him sleep in Thursday morning and got him there just in time for his field trip. He got his regular “Normy” welcome when I walked him to school. Everyone yelled, “Sam!” and he got a big smile on his face. He helped me with the basketball draft last night for Andy’s age group, he was very good at rating the players.Â
Andy did really well in the draft. He’s becoming a good  I drove for his field trip yesterday morning to the zoo. We had a nice time, though it was a long walk with five and six year olds who started telling me they were hungry the minute we parked probably only a half hour after breakfast. Towards the end of the day we met up with another mom and her group at the turtles. She laughed and said that her group of girls were all wiped out but immediately perked up when Andy arrived on the scene. She said, “he is the cutest kid, he should be Hukleberry Finn and he’s just so nice. The girls all love him.” It was nice to here. He is very happy to have us all back. I’m calling all hands for him this next week. The last day of school is on Monday, he has a speaking part in the final school program. We’ll go inpatient on Tuesday so if you are on your way to the park or somewhere with your kids that might be fun for Andy and or Charlie please give us a call. Charlie would probably be happy just seeing Jett for a day -no pressure Kelly ;-).  Elizabeth will be here of course but some distractions might be good for Andy especially. Also, on that note, Sam won’t be neutropenic and can have visitors. He is a visitor junkie in the hospital when he’s feeling good and sometimes says to me, “So who is coming next?”
Charlie man is also very happy to have us all home and the whole household is back to chaos as usual. Charlie is still patently refusing to be potty trained. His response to any suggestions is a resounding, “No.”  He is so darn cute though, it’s hard to get too frustrated. He got some new “worker trucks” with Elizabeth so we have been playing a lot of “worker truck.” He knows the names of them all. We chase a lot of bad guys with his police cars too.
More soon. Thanks to everyone for all of the kind comments and emails, they have helped keep all of the despondant thoughts at bay.
Topics: Progress Reports | 16 Comments »
Home
By Margot | June 11, 2009
We are home. Got in tonight around 10:30. Andy and Charlie tried to stay up but were fast asleep camped out in the living room waiting for us. Thanks to everyone for the NY suggestions. We did get in a lot. We took Sam to the top of the Empire State Building at 10pm on Monday night – he was still on CA time and there was no line. He loved it. I think that was the highlight of his trip. We also did a carriage ride in Central Park and went to FAO Schwartz and Times Square and a very strange restaurant that blasts off to Mars that he liked a lot.  He was great at hailing cabs and really loved doing it.  We got to visit with John and Catherine and Oliver-after which Sam said, “Maybe we should live here.”   We also got to spend some time with my friend Bekah and Neil Gudovitz both of whom Sam had a great time with and last night we got to have ice cream and play Clue with Meryl and Andrew and Ian -which Sam said was the high of his day yesterday. He wants to bring his brothers back to see everything. He did miss them and they missed him. Meryl asked if he liked having his parents to himself and he said “umm sometimes” but I think he would have liked everyone along.  However,  it was quite sobering to realize how much effort and money it would/will? cost to get a family of five around New York. Yikes. Talk about sticker shock. And the fact that I don’t know how people keep their kids from getting run over.  Anyway,  We ate at the Pizza place around the corner a couple of times and there is a really good breakfast spot on 75th and York that’s reasonable -Bennuchios.
I know you are all waiting for the medical report so here it is: we really liked Dr. Modak and Sloan was great -Sam loved the playroom. Everything ran very smoothly until we had a two hour wait downstairs for the CT.   Otherwise though, we really liked it there. Unfortunately, Sam’s MIBG scan showed progression in is legs, pelvis, spine and arms. We don’t have the official report back yet but Dr. Modak went over it with us and his words were, “it’s an impressive amount of disease.” Right on cue last night Sam started complaining of leg pain walking around Times Square and this morning he told me his lower back had been hurting but he hadn’t told us. Neil and I both thought he was limping a little the past couple of days but when we asked him if his leg hurt he said, “no.” He never wants to say much. His CT was clear which is good but Dr. Modak thinks we should try a round or two of ICE instead of the NK protocol since Sam has seen a lot of the chemo on the protocol already. Dr. Modak did say he looks fantastic and after getting his history and realizing he hasn’t had much high dose chemo in the past few years (comparatively) he thinks he should respond very well to it.  We will start on Tuesday after his last day of school. Whether it’s ICE or some other variation of high dose chemo, we’ll need to start soon. Hopefully if we can get him clear we can still do antibodies but now we need to concentrate on clearing his bones. We have a couple of other ideas in the works as well. Anyway, it will be back to lots of hospital time and probably bounce backs.   Not the news we were hoping for obviously.  I’m giving you the cut and dried version but it was a gut wrenching day.    He had a great third grade year though and I wouldn’t take a minute of it back and I know he wouldn’t either.  Now we need to get him ready for fourth grade so he has another good school year.
More soon on the new new plan and I’ll put some pics up as soon as I can. We got some good ones.
Margot
Topics: Progress Reports | 22 Comments »
The Big Apple
By Margot | June 8, 2009
We are here at the Ronald McDonald House in New York. It’s 9:43 am and Sam, still being on CA time is still sleeping. We meet with Dr. Modak today at 11. We got in yesterday at around 4:30 and got checked in and such by 6:30. Uncle Matt and Rosco (the most awesome beagle) picked us up from the airport which made Sam very happy. We got the tour of the Ronald McDonald House and Sam had a quick game of ping pong in the playroom while still on the tour. He was starving since we hadn’t had much to eat on the flight so we decided to eat around here. We needed to find place with outside tables so we could accomodate Rosco. The first couple of places had people waiting in line and were packed so we crossed the street and went to a little bar/restaurant place where the tables outside were totally empty. Note to selves, if restaraunt in empty in New York, food might not be that great.   It was actually not too bad and Sam loved the mini-burgers so it worked out fine. We then went for frozen yogurt down the street and we sat on a bench outside and watched the people go by. A very nice man and his wife stopped to talk to Sam and Neil about their Notre Dame shirts. It was clear after a few minutes that they were both completely smashed. He said he was from the Bronx and kept trying to give us his baseball hat and sunglasses for some reason. He put it on everyone’s head and after trying to give it back several times, we just kept them and he and his wife finally walked on. It was probably a fitting introduction to New York. We were all pretty exhausted so we went back to the Ronald McDonald House and Sam played some foosball with Uncle Matt and then we went upstairs and went to bed.
Meanwhile, back at the ranch…. Andy and Charlie said goodbye to us yesterday morning. Charlie was actually pretty good about it. I’m not sure he understood we’d be gone for a couple of days so we left to his cheery, “Bye Sam! Bye Mom! Andy was very teary and I was worried about him. I called him when we landed and he hopped on the phone happy as a clam and said, “Mom! Mom! The high of my day was going on the paddle boats with Grandpa. Charlie kept steering us in circles so I had to take over driving after Charlie gave it a try.” My Dad and Stephanie took them out to breakfast at the broken yolk and then paddle boating on the Bay. Then they went to the Monacos for dinner so I’m thinking they are not missing us much. I’ll call today to see how they are doing. As we were eating dinner and watching all of the cars go by I kept wanting to yell out, “Firetruck!” “Truck with a digger on the back!” but had to stop myself because Charlie obviously was not with us.
Sam is in good spirits. It was fun to hang out with him on the plane. He loved tracking the plane’s progress which you can do on the little screene on JetBlue. It was sort of the airplane version of “Are we there yet?” He said he likes New York so far and was very excited to see the Empire State Building in the skyline on the way from the airport. He’s always up for an adventure and was in good spirits last night. Thanks to everyone for all of the suggestions. We’ll definitely have to hit the Times Square ESPN zone and we promised Sam a trip to FAO Schwartz. He keeps calling it UFO Schwartz. We never got back VMA/HVA last week so we are going in to the scans a little bit blind. I’m taking comfort in the fact that Sam is feeling good with energy to spare -he was awesome in his basketball draft on Saturday morning – though I know it doesn’t always correlate.
More soon.
Margot
Topics: Progress Reports | 10 Comments »
A Few Pics
By Margot | June 4, 2009
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Andy, Jake and their girls on their field trip, Sam and Joe on their field trip, Sam holding Patrick the starfish, and Charlie on the swing (pic by Meredith)
Topics: Progress Reports | 2 Comments »