Spoke Too Soon
By Margot | July 2, 2009
Sam woke up with a painful red rash all over his body yesterday. We thought it might be a drug reaction to Vanco but most of the doctors that looked at it - we had in infectious diseases, dermatology and the oncologist on the floor look at it- didn’t think it looked like a drug reaction. It looked like the reaction he had to cephapine to me but what do I know. We convinced them to take him off the Vanco and put him on something else anyway. Dermatology wants to biopsy it today to make sure it is not fungal and dangerous. The oncologist yesterday said even though the line didn’t culture yesterday since Sam is still having fevers, she’s not convinced it’s not a blood/line infection and wanted to keep him on the Vanco- (we switched him off of it). That is very different from what the oncologist had told me the day before. The oncologist from two days ago was pretty convinced it wasn’t line related since we’d had negative cultures all week if yesterdays were to come back negative which it did. Sam finally got up to do his own time in the playroom with Angela after I’ve been nagging him about it all week but he couldn’t hold the air hockey thing because his hand hurt from the rash and he just looked so strained that I felt terrible. When I went back in he was smiling playing Clue Jr. with Angela but it was a pretty quick playroom time. Neil stayed last night. I left with Andy and Charlie around 9:15 and he already seemed to be feeling a little better, we played sports hangman that Madison’s mom brought - Thanks Angela!- and the boys loved it. Maybe I was just hoping he was feeling better. I’m hoping to go in early this morning and find the rash fading so he doesn’t have to do the biopsy and he can maybe go home some time this weekend. I’m hoping his ANC is up and he can start fighting whatever this is. They wanted to biopsy yesterday with a local but Sam wasn’t having any of that so he’ll need to be NPO today (which is a laugh because he hasn’t eaten anything much anyway). He is still running fevers 102 yesterday and he is pretty miserable. He managed a few jokes though and when Neil called and I told him Sam was pretty miserable thinking he couldn’t hear me and he yelled out, “I’m not miserable right now!” His new hearing aids sure do work well. I keep thinking with all of this where the heck would we have been if he had gotten the whole dose of chemo? He got a lot of chemo.
Anyway, I’ll try not to leave everyone hanging and post later today.
Andy has been hanging with the Brunettes the past couple of days and Monday he hung out with Beau all day. He and Luke have done a tennis clinic together and then Meredith took them to the beach yesterday. Today he has Luke’s birthday party. Thanks Meredith, Lisa, Pam and Monica for giving him some fun. Jett is finally better so Charlie is having a playdate with him today. He is so excited. I bought Thank you notes in the hospital gift shop yesterday and then started laughing to myself because I don’t even know where to start with all of the people we owe Thank You’s to.
Please think good thoughts for our little boy today. I want the smile back on his face and he wants OUT.
Breaking News: Neil just called - no fevers all night and ANC 330 Wahoo! Sam’s still sound asleep so no news on the rash but I’m thinking it’s going to look better now that we are off the Vanco. Here’s to gut feelings. Hope we’re right.
Margot
Topics: Progress Reports | 10 Comments »
Line Didn’t Culture From Yesterday
By Margot | July 1, 2009
So they are thinking it was probably an outside contaminant and not a line infection because the culture they did yesterday morning at 4am before starting the Vanco didn’t culture which means the blood was contaminated after they took it out of Sam. Hurray. Anyway, we hope so. If this mornings culture comes back negative tomorrow they will take Sam off the Vanco and assume it was an outside contaminant. ANC today is 32. We are slowly creeping up. Platelets are 96. Red Blood 8.2 and LDH…Ta da: 351 which is actually low. So good news all around today. Sam is still sleeping because we read Blubber until late last night. He still has horrible acid reflux. We switched to prevacid last night from protonix but it didn’t seem to help much. He’s eating but only bites at a time. He pitifully picked tiny pieces from the top bun of a grilled chicken sandwich and little bit of baked potato that Neil had to go on a wild goose chase for before taking Charlie and Andy home. I don’t even want to think about how much weight he’s lost in here. We need to get him out of bed today. It’s very unlike him and I know he feels crappy,. but he’s just wanted to lay around. Yesterday I got him up for some tennis in the hall - Nadal is best on clay, Federer on grass, Sam was pretty good on Rady Childrens Hospital Tile. We almost nailed the lady setting up the afternoon parents tea several times but she was pretty good about it. It was quite the image, both of us with masks on, Sam attached by several lines to his pole, playing tennis in the hall. Sam is still spiking fevers - got to 102 last night. Hoping once that ANC comes up that nonsense will stop. So mostly good news today. Sam is still sleeping so I can’t give you a mood report but as long as he’s not eating and in pain, he’s doing pretty well. Maureen came by last night which made all of the kids happy. Thank you Maureen!
Sorry about the false alarm report - at least we’re thinking it’s a false alarm - he’ll stay on Vanco today until we get another culture back. It was pretty grim around here yesterday morning contemplating the line infection but things are looking brighter today.
Margot
Topics: Progress Reports | 8 Comments »
Line Infection
By Margot | June 30, 2009
Sam has a line infection. They cultured something. That would explain the fevers. He is now on Vanco which he has to be premedicated for because he gets redman’s syndrome so he is sleeping at the moment. Neil said he woke up happy and in a good mood before I got here then tried to eat something and had horrible acid reflux again. We got some great suggestions for drugs and foods to try, he’s on IV protonix but it doesn’t seem to help at all. Last night I got him to eat some apple cut up into small pieces and some broth and that didn’t hurt too much. Yesterday he was on morphine for the pain which seems crazy but he is in a ton of pain after he eats anything.
So the Vanco course will probably be a week -maybe two twice a day. It runs over an hour and a half. We’re trying to see if we can’t get home health care to come and do it at home if we ever get our ANC to go up and get out of here. It is 8 today. Yesterday it was point one and the day before it was less than point one.
When Sam is not eating he’s in pretty good spirits but doesn’t want to get up much so we are making him get out of bed. Angela (the awesome child life specialist) is trying to get his own playroom time again today. Yesterday he had it but didn’t want to go because he was in too much pain from having tried to eat something. We read the abridged version of Moby Dick yesterday and he really liked it. He wanted me to read the whole thing so we did. The whole family watched Transformers last night in Sam’s hospital room, I didn’t get Andy and Charlie out of here until 9:30. Neil took Andy and Charlie out to play for a while last night while I sat with Sam and the hospital was having karioke night in the playroom. Andy sang Eye of the Tiger for the whole crowd and Neil said he was a big hit. He hit the wall about the time I was getting them out of here and on the car ride on the way home he said, “It’s not fair. Other families don’t have kids with bad guy cells. Why do we have to have bad guy cells? Why does Sam have to be in the hospital?” I’m telling you my armchair psychology skills are getting a workout this week. I talked to him for a long time but am not sure if I was helpful or not. I actually got on the Internet when we got home and showed him a picture of a cloud with a silver lining and tried to explain what it means. Pretty cliche. This morning we drew some pictures which seemed to help. Maybe I’ll try that with Sam today.
Andy is at tennis today with Coach Joe and then will play with Luke until basketball practice tonight -thanks Meredith. Charlie is home with Elizabeth and is waiting for Jett to get better. He says randomly “I wonder when Jett will be better, I think maybe Wendesday” sometimes he says, “I think maybe Friday.”
I booked Sam’s birthday party yesterday for the 10th of July at the Laser Tag place. He’s very excited - that perked him up a bit last night. . We are going to Philadelphia on the 15th for a consult. If we get out of the hospital with Vanco, Sam will have to stay accessed which will suck but at least he’ll be out. I’m counting my chickens though because with an ANC of eight the egg hasn’t even been laid yet, much less hatched. That’s about all the sucky news I have to report. It will be even suckier though if the Vanco doesn’t work and we have to take his line out so even though I’m whining about Vanco - I hope it works. One day at a time. Thankful Sam is feeling good when he’s not eating. He loves his nurse Kaitlyn who is bringing him a pictures of the Atlanta Falcons quarter back Matt Ryan who she knows from college. She’s been great with him. He talks football with her and yesterday was telling her that his favortie player on the Giants team is the tall running back (I can’t remember his name).
Hold on the LDH in the 400s because at least that means this chemo, with all it’s bad and far reaching side effects, might be working. MIBG scan is scheduled here for the 8th.
Margot
Topics: Progress Reports | 9 Comments »
Generally Miserable
By Margot | June 28, 2009
We are on day three of high fevers with no counts. The doctors want to do a CT scan to make sure we aren’t missing anything and add an anti-fungal. ANC was zero today and platelets were 63 -right after yesterday’s infusion so he’s not making many platelets. His stomach hurts and last night right at shift change he started getting painful acid reflux which has not gone away. We’ve done IV zantac but are moving up to something stronger soon. The look of misery on Sam’s face is pitiful and added to that he’s losing his hair which he just noticed all over his pillow. On top of all that they just came in to let us know they are going to put in an IV for the CT and he just threw up a bunch of green bile. I don’t know how many more indignities and prodding he can take. As you can imagine he is miserable mad guy right now. Understandably so, I I’d be breathing fire myself.
On a good note Mac and Lisa stopped by with bagels and coffee this morning and he perked up quite a bit though didn’t eat anything - his first smile of the morning was when we were playing the Mad Libs that Mallory dropped by yesterday. Thank you thank you Mallory and thank you for running to the store for TUMs. We also started on Matilda last night that you brought. Anyway, after Lisa and Mac left Sam started feeling pretty miserable.
He and I had a nice quiet night last night after everyone left. I love reading to Sam here. We’ve been through so many books while we’ve been here and I love his little laugh at Uncle Feather in Fudge calling people a Turkey Brain. While we were reading last night he said, “this book is making me hungry.” So I ran to the fridge and warmed up some salmon which he ate -the only other thing he ate besides two small blueberry muffins yesterday. Unfortunately an hour after he ate he started getting acid reflux and it bothered him all night. At one point in the middle of the night during one of his high fevers when I had to leave him with only a sheet he sleepily said, “it’s not fair that Andrew gets to sleep in a nice warm bed while I’m stuck in here with only a sheet.” I told him when Andrew was sick with his high fever he had to only wear a sheet too. “Oh.” Sam said. That seemed to make him feel better but maybe I should have said “I know it’s not fair. None of this is fair.” If cancer were a bullet we parents would dive in front of it but we can’t so instead we have to hone our psychology skills. I’m afraid mine not be up to par. Sam is watching the Brazil/US soccer final right now and looking a little better. It has caught his interest at least. Neil went to shave his head and took Andy and Charlie with him for haircuts.
It’s looking like the meds - zofran and zantac might be kicking in a bit as his miserable face is easing a bit and he’s glued to soccer.
More soon with hopefully a better, more cheery update. Thanks for all the book suggestions there were many books suggested we haven’t red yet. Last note LDH was 456 today lowest in months.
Margot
Topics: Progress Reports | 11 Comments »
Back In
By Margot | June 27, 2009
Sam’s fever spiked on Thursday night and his ANC was zero so we were admitted. He’s not eating much of anything but otherwise feeling ok. Mimi came and visited yesterday and Mac may come this morning if and when Sam wakes up and Joe will come this afternoon. He’s getting a red blood cell transfusion right now and Neil said his fever got to 104 last night. Ugh. His ANC today is 25 so maybe he’s on the way up. His platelets are 30 and they are transfusing platelets right after the red blood this morning so he’ll probably stay sleeping for most of the morning . Temp is 36.5 C so temp down. I’ll bring the boys in later this morning. Yesterday we read the last of the Judy Blume Fudge books and are looking for more funny books. Suggestions are welcomed -he’s finished all the Wimpy Kids. We had a big family game of clue and bingo last night and Mimi and Billy played a lot of clue and bingo yesterday with Sam. He’s a Clue addict now. When Neil came yesterday he brought the volleyball and tennis balls and rackets and the boys played four square in the hospital halls. Neil said both Sam and Andy stole the ball from Charlie with no mercy causing Charlie to scream. I know that hosptial just loves us. We have nurse Sheila today. Hurray hurray. When I took Andy and Charlie home nast night around nine Sam and Neil were just starting to watch Shrek. Sam was dancing in his bed to All Star as we left.
Andy had his first basketball game yesterday afternoon at 4:30. The team did really well but the first thing Andy will tell you is that they lost. He had fun though and aside from Lance having to tell him to pass (he was being a bit of a ball hog) he did great -made two shots and played good defense and even had an assist after he was admonished to pass. I think it’s hard on Sam watching Andy go about with life outside the hospital - especially now that Andy is older and doing many of the same things Sam would be doing and I’m trying to be sensitive to it. Sam’s first game would have been this morning but he was sweet when I told him maybe next week if he’s feeling better. He perked up and said “Ok.” But I can see it’s hard on him.
Andy has given me until he counts to 60 to play the hide and seek/tag/monster game he made up. It’s an interesting game because Charlie gives everyone away. As soon as he’s found he says, “Go get Mom, she’s in the closet!”
We’re lining up scans for next week. LDH was down in the 600s this week. Hopefully a good sign.
Margot
Topics: Progress Reports | 9 Comments »
Out but in clinic for blood today
By Margot | June 25, 2009
We got out of the hospital yesterday afternoon. Joe came and horsed around with Sam all day until we got out and they had a great time playing video games, seeing the miniature horses that were there and going to the play room. Thank you Joe and Colleen. We had a nice afternoon, dinner together and a walk around the block. As I was walking with Sam he said, “Mom, I really didn’t want to do chemo and hospital stuff over my summer.” We hear ya buddy. This morning he had an appointment for new hearing aids. He was pretty lathargic the whole appointment -admittedly it was very early but then just wanted to come home and go back to bed. He’s pale and I’m thinking needs a refill of red blood so we are on our way into the hospital for that today. Temp has been hovering around 98/99 so as long as it doesn’t go higher we’ll stay out of the hospital. His new hearing aids have transposing technology that transposes the higher frequency sounds that he can’t hear into the lower frequencies. As sleepy as he was I could tell it made a huge difference. She tested him on all the words he missed when asked to repeat them on the last test and he got them all - even the “th” “s” and “sh” sound words he never got before. And she whispered to him and he heard her! Crazy stuff. Now we just need to cure cancer and all our problems will be solved.
Andy is at science camp again today. He said it’s the wrong kind of science camp. He was hoping for the kind with exploding potions and making stuff where “you pour one thing into another and then you drink it and become super fast and super strong.” Why I couldn’t find him that kind of science camp I don’t know. Charlie man is doing well - funny happy little guy. Andy was telling me something last night and Charlie repeated every single word he said.
Margot
Topics: Progress Reports | 1 Comment »
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.
Update : fever broke 11:00. He is sleeping peacefully.
Margot
Thanks so much Monica and Elizabeth for all your help today.
Topics: Progress Reports | 6 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.
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 »