Halloween Pics
By Margot | November 3, 2009
All of the boys
Hopped up on Candy
Today went well. Clear so far. Sam went to school and didn’t run. I had a whole contingent of people helping to remind him, teachers, his friends and aides. I took Andy out of school early and he and Charlie had a swine flu shot party with Meredith and her kids and Joe and Jake. We raced them down to a clinic that had the shot and by some miracle there was no line. Charlie was not happy with me at all but now all of the boys have had the shot. I told Andy not to scare Charlie about it and not to say where we were going so he runs in the house and says, “Hey Charlie, we’re going to Legoland!” Poor Charlie boy, as we were signing up for the shot he said, “I thought Andy said we were going to Legoland.”  Sam said he had a boring day and none of his class likes the sub because she is a yeller. They miss you Mrs. O! Both Sam and Andy’s teacher are at a conference in Colorado for the International Baccalaureate program and they are sorely missed already. We will do a blood check tomorrow and so far so good on the bladder. We are still pretty scared on that front.  We’re hoping the stem cells engraft soon and platelets start to bump up some.
Margot
Topics: Progress Reports | 5 Comments »
Out Yesterday Had Halloween
By Margot | November 1, 2009
Just a quick post to let you know that Sam got out of the hospital yesterday at about 2pm and we had Halloween!  The nurses and I tried not to look to eager to the urologist lest she think we had any plans and we got sprung.  I love our nurses. If you get a chance hug a nurse today.  Also, I have to say, that Dr. DeCambrie (the urologist) did get Sam in the OR first thing on Friday which allowed us to get out and she did let us out and she did do a great job on his bladder.  We brought the wagon and Sam rode up and down our neighborhood with his brothers and the Monaco boys and had a great time. We put in a quick show at the St. Germaine’s party and called it a night.  Sam was ready to party all night but we didn’t want to be stupid so took it pretty easy. Clear pee. Neil set his alarm last night and woke Sam up every two hours so we didn’t take any chances.  Pics tomorrow.Â
Thanks to everyone.
Margot
Topics: Progress Reports | 9 Comments »
Better and Possibly Home Today
By Margot | October 31, 2009
Sam came out of surgery yesterday with clear pee.  Dr. DeCambrie got us in by 9am yesterday and he was done by noon. She said his bladder looks much worse this time around, she showed me some pictures of it just gushing blood. Sam is going to have to lay very low for six to eight weeks and she would like for him to do a hyberbaric oxygen chamber to help heal his bladder. I guess they have one at the UCSD cancer center. Happily, hyperbaric oxygen is supposed to have a nice anti-cancer effect too.  Neil stayed with him last night and as long as he didn’t have any bleeding last night ( I haven’t called to wake them up yet). He can come home today so we are not stuck for Halloween. Dr. DeCambrie spelled out for us in no uncertain terms that he is not to traipse around trick-or-treating but we will rig something up for a few doors and then lay very low. He’ll just be so darn happy to be out of there. Mrs. O’Donavan, Sam’s teacher came to visit him last night and brought a whole bunch of things from the Halloween carnival. She was so nice and stayed until almost 8’oclock. She gave Sam the run down on how everyone dressed up.   We had to visit in the lobby of the hosptial because they won’t let anyone in that place.  Thanks Mrs. O! Uncle Matt is here and that makes the boys very happy. Sam was so glad to see him yesterday and Andy and Charlie had a good time teasing him last night too.
I was able to get to the carnival to paint Andy’s face and he was a great Darth Maul. He went through the haunted house with me and was pretty scared. He waiting in line with Joe and Jake later and then got to the very front of the line and said, “Uh, I changed my mind.” I’ve already gone through and I only go through once a year. That’s my policy.”   I dressed up as the scary unshowered mother in a baseball cap and worked a couple of the class booth for a little while. Then we took Andy to basketball at the rec center and Charlie to the rec carnival in his spidey suit. He had a ball.   He and Joe went down the big slide jumpy a million times with no hesitation. He’d get to the top and wave and then do a huge jump and fly down. His costume made him zoom down that thing. When Sam and Andy were little they used to get to the top the first time and hem and haw about going down. Charlie had no hesitation whatsoever.
Colleen took Andy and Charlie home with her for a while. I got back to the hospital around six and Sam was looking really good. He was excited to get dressed and go see his visitors in the lobby though he was pretty quiet once he got out there.
Thanks to everyone for their kind comments and emails. Yesterday morning was pretty low but I’m so glad that the urologist got us in to the OR so early.
He’ll have a lot of chess matches in the near future and maybe we can replace soccer and tennis with guitar lessons as Uncle Matt suggested last night. He’s wanted to learn guitar for while. Maybe he and his cousin Marty can play together next time we see the Aussie gang. He was pretty good about no more soccer this season since the season’s almost over. He said, “I don’t care that much about missing the rest of soccer since the season’s almost over and my team’s not that good anyway but Dad said I can play baseball in the Spring after this gets better.” He ended on a high note. He scored a goal in practice scrimmage on Tuesday and he and Andy had a really good time playing together on the same team.Â
I’ll post after Halloween and hopefully have some pics for you.
Margot
Topics: Progress Reports | 9 Comments »
In the Hospital with Hematuria/Stuck for Halloween
By Margot | October 30, 2009
Sam’s bladder started bleeding again on Wednesday afternoon. It’s very dark red with lots of clots this time around. We sent him to school yesterday with a huge bottle of water hoping against hope that it would clear up and he could have Halloween. Yesterday afternoon it was looking worse and he said he’d felt woozy all day and he thought he was going to need blood today and would he have to miss his Halloween carnival. We called in to the clinic and they said to bring him in right away and he was at 6.7 hemoglobin last night and bought himself a blood transfusion. Last night he couldn’t go pee at all and when he was finally able there were huge clots coming out. We were on the verge of putting in a catheter at 3 am when I literally pulled several clots out.  There was blood all over the place, I had it in my hair. The uroligist came in this morning and was not happy (this putting it mildly) at all the activities Sam’s been up to. Though Neil and I both swear she said three weeks and she said she said six weeks. Doesn’t really matter though.  She’s going to try and get him on the OR schedule today to get it cleared up. She nearly bit my head off when I asked if it would be possible at all to get him out for any trick-or-treating and sarcastically remarked “And when would that happen?”  She said his bloody clotty urine sample was “impressive.” What is it with doctors and “impressive?” I felt horrible when she left and sat again in a dark room next to a sleeping Sam with tears running down my face.  Sam’s favorite holiday is Halloween and he was really excited because we bought tatoo sleeves so it will look like his arms are all tatooed as David Beckham.  He asked Neil last night, “Am I ever going to be able to have a normal life and go to school every day?”  He also said he’d wished we’d brought him in on Wednesday night so maybe he could have hit Halloween.  That was my fault because I thought it might clear up as it had in the past.   I should have known better though.  Andy and Charlie cannot come and see Sam because of the swine flu outbreak.  Agh. This sucks and it is scary for poor Sam.
 The title of my last post could have stood for the past week and a half as Sam’s platelets have been dropping by about twenty per day. They seem to be holding a little better this week as not dropping as fast. He had a transfusion on Tuesday and he’s at 50 today. His stem cell rescue at City of No Hope went fine (except for a pessimistic doctor) and aside from transfusions, he’s been great. Doing all normal boy stuff, soccer practice when tanked up on platelets and birthday parties (thus the displeasure from our uroligist). Charlie and Andy are good. Very excited for Halloween.  I have some good pics of Charlie flexing his muscles in his spidey suit at his preschool parade. He liked it so much he didn’t want to take it off so when the other kids put on play clothes he just kept his whole suit on. I’m going to try and get to school today and paint Andy’s face like Darth Maul since he can’t wear a mask.
I’m trying to get myself out of my funk before Sam wakes up because it’s going to be an uphill job trying to give him some cheer. I keep reminding myself what the nurse said to me the other day in clinic while Sam was getting platelets. We were reading the new Wimpy Kid book and laughing so hard (Sam nearly cried when they left the mom of the family at the gas station bathroom) and we were playing chess. The nurse said to me, “Aren’t these good times? You guys just seem so happy sttiting here together.” And so, though I have a lump in my throat at the thought of telling Sam that he will be having surgery today and not going to his school carnival I’m going to get over it and somehow, somehow make it up to him.  I know I’m feeling sorry for myself and Sam and I do know how lucky we are. For a little ray of sunshine, Sam’s VMA was down to 12 today.
 They just came in and said they can take us to the OR in an hour. They will hang some more platelets right before we go in.
Margot
Topics: Progress Reports | 15 Comments »
Getting Blood and Platelets Today
By Margot | October 19, 2009
We are in the hospital all day today getting blood and platelets. Sam’s platelets were at 4 today. Yeeks! They called us right back after the blood check and “Come back now!”  I didn’t have it together for homework so we are playing chess and Blokus and Sam is currently watching the Pink Panther. We will go up to the City of Hope on Thurday for the stem cell rescue on Friday. Our insurance approved it there instead of here in San Diego so we will drive the three hours up on Thursday for the required doctor’s check and then do the stem cell infusion on Friday. It’s an out-patient procedure so we may bring the whole gang. Not sure yet. We’ll have to see if City of Hope is shut down for siblings like San Diego in which case we may not all go.Â
We had a great weekend.  On  Saturday we had soccer (Sam’s team got creamed but he was happy to play) and Andy’s team is still undefeated – he scored a goal) and went to the park in the afternoon and out to pizza. Sunday the boys and I went to see The South Pacific. Our friend Mac was in it and it was really well done. Charlie even sat through the whole thing which is pretty long for a three year-old. He said halfway through, “Mom, does this movie only have persons in it?” It was kind of funny. Sam and Andy acted like they were too cool for it. Andy actually said, “Mom, we’re not really play kind of guys, we’re sports guys.” Ack.   Gotta work on that.  Maureen came over for dinner last night and we had a good time with her. She helped Sam finish his ad poster that he had to make.   He had to make an ad for a health product so he thought of a vitamin dispenser like a Pez dispenser with Sports team themes.  He called it a VEZ. I thought it was really creative.  He drew them all freehand. His artistic abilbity blows both Neil and me away because neither of us can figure out where he got it.   Don’t tell his teacher but he got the idea from the Bud Light commercial that comes on during football games for “the grueler” – the grill that’s a cooler.
Andy lost his first tooth. He woke up yesterday morning and we were talking and all of the sudden he said, “Wait a minute!” and ran to the bathroom where I heard a huge inhalation of breath. He came out and said, “Mom my tooth fell out last night but I ‘must have swallowed it or lost it.” We looked everywhere around his bed for it but didn’t find it so he wrote the tooth fairy a letter: “Dear Tooth Fairy, my first tooth fell out but I lost it.”   No signature or anything.  He woke me up in the middle of the night and said. Mom, I’m just going to the bathroom. “Hey, did I tell you, the tooth fairy left me some money? Yeah, my pillow was hot so I flipped it over to get to the cool side and there it was, money from the tooth fairy!” He’s been waiting for a tooth to fall out since he was about four so he is very excited. It was the first thing he told Heather in the office this morning and his teacher when he walked in his classroom. Now he gets to put his name on the tooth list in his classroom. He’s doing really well in school – smart as a whip.
All of the boys are so excited for Halloween. Hopefully with the stem cell infusion this Friday, Sam will have started engrafting by Halloween and have good counts.  Diane at CHOP said he should have another GCSF shot shortly after the stem cell infusion.
That’s about all the news I have to report.  Forgot to report that we ran into (almost literally coming out of the elevator) our favorite nurse Lauren at CHOP when we were there. It was great to see you, Lauren.  I’ll report more when we are up at City of Hope. Our third hospital this month.  LDH was 572 today – normal.Â
Margot
Topics: Progress Reports | 5 Comments »
The Band is Back Together
By Margot | October 16, 2009
We are home and as Neil says, “The band is back together.”  We were almost the Beatles for Halloween but the boys weren’t up for it. I guess it’s a good thing since I’m a little tall to be Yoko ;-). Â
We stayed in the hospital Sunday night thinking Sam might need a platelet infusion Tuesday morning after the scan. We didn’t, Sam was still at 75. The scan still looked like there was a lot of uptake and the spot above Sam’s knee is super-bright but Dr. Maris says that scan is only to make sure there is uptake and not diagnostic and the diagnostic scan was much much better. After the scan, Uncle Matt drove us (Sam and me and Grandpa) to Washington D.C. and gave a us tour of his former city, hitting all of the major memorials but the Lincoln and we all went out for tacos with Uncle Matt’s friend Susan.   Sam had a good time with Grandpa and Uncle Matt. He nicknamed Matt “Uncle baldy” even though he’s not bald. We stayed at the Mayflower (Neil kept calling me the Mayflower Madam (ha ha)). I got an awesome deal on priceline.   We didn’t see Elliott Spitzer. Tuesday we hit the Air and Space Museum and The Natural History Museum. Sam liked both, he saw a mummy and The Hope Diamond and we watched the IMAX movie The Wild Ocean in the Natural History Museum when we were worn out from walking.  It was great to have my dad with us.  Thanks Dad. Our family friend Amy came and had lunch with us.  (Amy I’m sorry we never made it back to Penn Street Sam wanted to see the Lincoln memorial). Our last stop in Washington was the Lincoln Memorial. It was about 5 o’clock in the evening and a beautiful night. The park ranger gave a talk on Martin Luther King and then played the “I Have a Dream” speech. It was a pretty magical moment sitting on the steps of the Lincoln Memorial snuggling close to Sam listening to that amazing speech. Sam said it was one of his favorite parts of his visit to Washington.   No disrespect to Dr. King but as I listened to his speech I thought of my own “I Have a Dream” speech for cancer parents and it involved less barbaric treatment and less time away from home and less time in hospitals and less and pain and trauma in general and of course it involved long normal lives. Â
We took the train back to Philly and Sam was impressed that he went through four different states in one day- Philadelphia, Maryland, Delaware, Virginia, and D.C..  Sam was hungry at 10 at night (very typical of him) so we got to meet Donna and Erik Ludwinski  in the Korean restaurant across from the Sheraton. It was wonderful to meet them and spend some time with both of them. We tried to give Erik the dirt on MIBG treatment as he is starting today.   We also met the Chances in clinic on Wednesday when Sam was getting platelets ( he was at 22) Patrick is such a cutie. Unfortunately the Chances got news of a bigger lesion yesterday – this sucky sucky disease – and will be changing treatments.  Please keep them in your thoughts. We met the Malicks (Kayla and Lori) in the clinic as well. It’s like an NB conference at CHOP.    Sam and I left after he got his platelets and we talked with Dr. Maris and Diane Baniewicz.Â
Neil said Andy all day on Wednesday kept saying, we have big day today, we get to pick up Sam!  Even given all of the above activities, the biggest brightest smile from Sam was the minute the wheels of the airplane touched the ground and Sam asked, “Are we in San Diego?’ He raised his hand for a high five and started pushing on me to get off of the plane.  I had to remind him that the plane was still moving.   It is so so nice to be home. There were three very happy boys at the baggage pick up on Wednesday night.  Two normal days of school and soccer and a normal family dinner giving our highs and our lows are like heaven. Even with fighting boys.   Charlie went to preschool yesterday and cried again like his heart would break but then I spied on him from behind a telephone pole and he perked up after about five minutes.   His teachers said he had a great day but he still looked at me accusingly when I picked him up and said, “You took a long time to come back Mom.” Â
Please keep all of the families fighting this nasty disease in your thoughts and prayers. Please think good thoughts for Sam not bouncing back in to the hospital when his counts get low. Children’s Hospital is totally locked down for the swine flu and if Sam goes in he can’t have any visitors or little brothers come to see him. His taste buds are still fried.  He’ll probably need platelets again by Monday. But otherwise he is feeling fine and wants to play soccer tomorrow. So many people have told us how well he looks.    Here are some pics in front of the Whitehouse. We ran out of camera batteries shortly thereafter.
Margot
Topics: Progress Reports | 7 Comments »
Radiation level down 6.9
By Margot | October 11, 2009
We are cleared for take off from the hospital today. Sam’s radiation level was 57 on Friday, dropped to 18.6 yesterday and today is 6.9. It only has to be 7 or below for discharge. We have a scan tomorrow at 10:30 am but my Dad has a hotel room close by so since Sam is itching to get out of here, we’ll do the blood draw scheduled for tomorrow today and then just come back for the scan. That’s the plan anyway. We haven’t done any blood draws since before the injection to minimize exposure for the nurses. Sam’s radition level today is probably just above regular background stuff you get from the air. My Dad explained it all to me -how much you get per year from the sun and from the uranium in the earth’s core and how seven milicurie (sp?) equals about 1 milirem and most people get about 300 milirems per year form normal background stuff – so a little less than one per day.
The nurse just came and took Sam’s blood so if he needs transfusions, we’ll get them before we get out of here today. He’s feeling well and hungry so that’s a good sign. Friday night his jaw swelled up and his salivary glands started to hurt and he threw up in the middle of the night Friday and some of yesterday morning. By ten o’clock last night though he was feeling better and had two tacos and two bowls of Ben and Jerry’s Ice-Cream that we went and got while Uncle Matt stayed with Sam. He’s playing a video game now. Our flight back to San Diego is not until Wednesday and it’s prohibitively expensive to change it until Tuesday (the difference in fight prices about $600) so we are thinking of leaving for Washington DC on a train after the scan and going to see some sights for a day. That plan may change depending on how things go today and tomorrow.
The boys just called for some pancake instructions. Charlie woke up and Neil said, “Tell mommy what you slept in last night.” “I slept in my soccer suit, Mom.” Guess pajamas didn’t happen ;-). They seem to be doing fine. I sent Neil some instructions about Andy’s lunch for tomorrow since he was worried anybody else getting it right. He did well in his soccer game and scored a goal but he was in a bit of funk before he scored the goal and came off the field in tears and Neil gave him a pep talk before he went back in and he seemed to cheer up. He was in a good mood this morning when he called but has been kind of out of sorts here and there lately. I think this is all getting to him.
Sam is excited to get out today and ready to go home. His class is learning about communicable and non-comunicable diseases in health and someone called from the school and asked if the Child-life specialist would come from the hosptial again and talk to Sam’s 4th grade class. Most of them have seen the speil a couple of times but maybe Mrs. O’Donavan got some tough questions last week. Not sure. This is the paragraph in Sam’s health book says about Cancer: “Some people get cancer. Cancer occurs when body cells that are not normal frow out of control. Cancer cells often form lumps called tumors. Cancer can occur in nearly every part of the body including the bones and the blood. Cancer can also spread from one part of the body to another. Cancer is the second-leading cause of death in the United States.” Lovely. Sam and I haven’t done this chapter together yet but I guess I’m glad I’m teaching it. It goes on to say that scientists know what causes some forms of cancer. Then it moves on to diabetes and allergies. You know it’s bad when you wish you were on the drug addiction chapter instead.
Anyway, I’ll update on the scan and Tuesday’s plans tomorrow. It’ll just be to see if the MIBG is being sucked up in all the right places.
Margot
Topics: Progress Reports | 10 Comments »
HOT
By Margot | October 9, 2009
Sam was injected today with his second infusion of MIBG. The catheter was place at 6:30 or so this morning and things have gone pretty smoothly so far. It’s been very calm this go around. Neil and and Sam and I played Scrabble last night and he and I stayed up and read a book last night until 1am (he was not tired at all). Today we did some homework before the infusion and now he’s watching one of the many movies Uncle Matt brought him. Ho Hum. High level radiation. He’s been in great spirits and very funny. He’s charmed the nurses and his day nurse said she just loved taking care of him because he is so sweet. He is being a champ about things as usual. His catheter really stung this morning after they put it in but he didn’t complain much about it and only told me after he was thrashing around and I asked about it. It stopped hurting before we got the pain medicine ordered.
I know this is a very generalistic, country mouse thing to say but everyone here is so friendly. I’ll change my tune if I get mugged on the way somewhere but so far the City of Brotherly Love has been lovely to us. From the security guy who laughs at me every time I come down the elevator on another “step and fetch it” errand for Sam to the nurses who took care of us last time who stop their conversations to say and enthusiastic “Hi! How’s it going?” to the cab drivers who say they’ll keep Sam in their prayers after asking why I’m on my way to Children’s Hospital, to the ice cream ladies downstairs who have Sam’s milkshake order down pat so I didn’t even have to finish ordering it – today, I said, “half chocolate, half vanilla and she said, “with caramel, this must be for Sam. Tell your husband I was thinking of a Twix bar yesterday.” Even the weather has been great. Combine all that with a good scan and you might think we are on a radiation vacation. Ha ha. Not really.
Dr. Maris and Dr. Mosse came in today and we talked about some possible options in six weeks. He is very patient and kind and hopeful that we’ll make very good progress with the second round. We’ve met some more NB parents here thanks to my outgoing gregarious husband. It’s nice to compare notes and talk to people going through the same thing. Our neighbor is a nine year old NB boy diagnosed the same year as Sam. He just left today. I’ll post his site when I find it. Neil is on his way back to California. He left at around 3pm today. He and Sam had a lot of fun. Diane, Dr. Maris’s nurse, said, “So, Sam are you going to have to do homework now that the sherrif is in town?” Uncle Matt is currently on a mission to get Sam a cheeseburger (not from the cafeteria) of which he will probably eat one bite. If you want to go broke fast, spend a little time trying to tempt Sam’s palate in the hospital. :_). I walked the 30 minute round trip to get him some Salmon from Chili’s for lunch today while Neil played a last chess game before the infusion. He took a few bites and said, “You know, I liked this yesterday but I don’t really like it today.” At least it was a nice walk. My Dad comes in tonight around 8:30 so Sam can have three step and fetchers. It’ll be great to have my dad here.
Back at the ranch Maureen and Elizabeth have been taking great care of the boys. Maureen took Andy to back to school night and he showed her around his classroom and got her to buy some books at the bookfair and a video game. Charlie went to preschool yesterday and we were both crying when I left because I was about to hop on the airplane and felt terrible for my little broken hearted little boy. Fortunately, he had a great day and did fine. I think he’s turned the corner because he’s started asking if he has school each day. Andy has basketball clinic this afternoon and his soccer game tomorrow. Maureen will take him to basketball and then Neil will be home.
I’m hoping to get Sam to email his class tomorrow to say hello. Otherwise, we’ll be hanging out doing the Monsters Inc./Silkwood contamination thing. I’ll post the radiation numbers in the next couple of days.
Margot
Topics: Progress Reports | 8 Comments »
Much Improved
By Margot | October 7, 2009
Sam had an 8am scan this morning and Neil just called after meeting with Dr. Maris and Dr. Mosse and they are both very happy and see things as much improved. We got rid of most of the bone marrow disease.  Sam still has quite a few bony lesions but we made some really good headway and Dr. Maris was very pleased.  Hurray!   Sam wore his Giants jersey today to torment Dr. Maris who is an Eagles fan ;-). Yesterday he wore his Chargers jersey. I think he really likes Dr. Maris. Sam beat Neil at chess this morning and he was so excited to tell me about it. They’ve been playing a lot of chess and not doing a lot of homework -Ack! but are having fun together. Neil said they were on their way to Chilis for lunch -a two block walk up a hill from the hotel and all Neil heard the whole walk was, “Why can’t we get a cab?” “Where is a cab?” “Cab Dad?” All of our kids love the idea of hailing cabs ever since we went to New York City. The whole idea that someone will just stop and give them a ride is great to them.  Sam’s platelets are at 29 and he’ll get an infusion today and then an infusion of red blood cells tomorrow to get ready for MIBG. The therapy works better when the kids are tanked up on blood and platelets.  Dr. Maris didn’t seem too worried about the hematuria (bleeding bladder) and said it’s almost positively cytoxan damage plus dehydration.  He’s been clear since the cytoscopy but had some blood today (probably the low platelets). We are getting ready for the stem cell infusion in San Diego in a couple of weeks. I’m hoping we are all set by Halloween but we’ll have to take it one day at a time. Today’s a good day.
Back on the home front, Charlie went to preschool all day yesterday on his own. I left him screaming and crying but called in and he was doing better sitting in circle time and singing. He had a playdate afterwards at the park with Hank, a little guy in his class and they had a good time so I think he’s got a buddy now. I showed up to pick him up and he pointed at me and said, “Where were you?’ It killed me. Â
Andy is doing fine. He made a rolly poly habitat at school and has been finding rolly pollys all afternoon after school and now he’s got about seventeen rolly pollys.  He spends a lot of time practicing kicking his soccer ball outside.  We went and got some Halloween stuff at Party City and I had to steer him away from anything to gross in terms of decorating. I’m going to take him on a date day for his half day of school today and we’ll go do something fun together. Maureen is going to take him to his soccer practice, back to school night and basketball on Friday. She’s going to spend the night with the boys tomorrow night and then Neil will get home on Friday. Elizabeth will pick up Charlie from preschool tomorrow and Colleen is going to do school pick up for Andy tomorrow and Friday. So, as usual it is taking a village. So, Thank You Village!
I’ll update again when I get to Philadelphia. Good Scans today. Wohoo!
Margot
Topics: Progress Reports | 17 Comments »
Home/Sam Neil Off to Philly Tomorrow
By Margot | October 4, 2009
Just a quick update to say that Sam came home early yesterday morning. The procedure went well though it took a lot longer than the doctor originally thought. There were many many clusters of veins close to the surface of Sam’s bladder.  One in particular that was bleeding quite a bit so she cauterized spots all over the bladder.  When I went into the recovery room the bag from the catheter was filled with clear pee! It still hurts him to go but it seems to be getting better and better. There are some times when there is a tiny bit of blood at the end but nothing like it was and I think that just may take a while to heal.   Probably more info. than you wanted to know but there it is.
As we were walking out of the hospital yesterday Sam said, “Great, so can I play my soccer game today?” Since the answer of course was no Sam decided he didn’t want to go watch - it would be too hard on him- so the boys and I took Charlie to his first birthday party for one of his new preschool classmates. It went well, he actually interacted with a lot of the kids and kicked the soccer ball with his brothers when he got shy. Hopefully Tuesday will go well.  Andy did well in his soccer game yesterday morning and is very excited for Halloween. He changed his mind and is going to be Darth Maul and Charlie is going to be Spidey.  Our neighbor Jimmy lent Andy a supercool Darth Maul light saber. Sam is still going to be David Beckham so we ordered a jersey yesterday.  Sam and Neil leave for Philly tomorrow for the second round of MIBG. We are scrounging for warm clothes since we are not all that used to Fall/Winter around here.  I think we’re set now.
You know you live in crazy cancer world when: You are helping your three year old go potty and he says, “Hey, my penis isn’t red and no red pee! Yay!” and he claps his hands.
More later this week.
Margot
Topics: Progress Reports | 5 Comments »