Orbital Cellulitis
By Margot | December 2, 2009
Just a quick update to say that the head CT showed that Sam has orbital cellulitis. Basically it’s a sinus infection in the eye that can be quite serious but should be knocked out with the antibiotics within 24 to 48 hours. That’s a relief. Don’t know how left arm and leg relate but will keep you posted.
Thanks for checking in.
Margot
Topics: Progress Reports | 12 Comments »
Inpatient
By Margot | December 2, 2009
We are inpatient tonight. Sam had very bad head, leg and arm pain last night and a fever. We gave him morphine at about 1am and he went back to sleep. Neil called in the fever and Dr. Roberts said he’d be ok to wait until morning given he was sleeping at the time we called and his counts are very high. So this morning he woke up with eye nearly swollen shut and a lot of pain in his leg still, though not really his arm. He looked at me from the couch when Neil brought him down and I could see the fear in his opened eye. He said, “Mom am I going to be ok? Is my eye going to pop?” I reassured him that he was going to be fine and cursed while we raced around packing a few things and jumped in the car.  We gave him some morphine before we left and by the time we got to the hospital, he was feeling much better though his eye is still very swollen. Dr. Willert thinks it might be cellulitis of the eye and admitted him for a couple of days of mirapenum. His leg hurts to move or walk but otherwise doesn’t bother him.  Oddly, everything that is bothering him is on his left side. I have no idea if that means anything or if it’s just coincidence. He’s been NPO since about noon and we are waiting for another CT scan.  I’ll post as soon as I know the story. Honestly, we’ve had so much conflicting information lately, it’s hard to know what to think.  We are on an oral interim chemo and sometimes Sam gets pain right when we start chemo which can be tumor kill. So, I’m sorry to make you all play the waiting game with us again. He still has a fever and has been running around 101 all day. I finished reading Harry Potter to him and am giving my voice a bit of a rest now as he sleeps, then it’s on to The Chamber of Secrets (book 2 in the series).  He was just talking in his sleep and he said, “Do we have to take a airplane?”  Our poor tired guy.
Andy had his first all star soccer practice today and Carolyn Briski was nice enough to pick him up with Dusty and Ian and he was so happy to be going with them.  Thanks Carolyn. Charlie had school today and Elizabeth picked him up for us.  I don’t have any details as I haven’t been home.
Will post as soon as I know more on Sam.  Red, white and platelet counts today were beautiful. LDH was 3500.
Margot
Topics: Progress Reports | 5 Comments »
Clean bone marrows!
By Margot | December 1, 2009
We got the official report back today from San Diego and aspirates and biopsy were clean. Yeah! We still have to reconcile the other read indicating heavy involvement but that will work it’s way out in a few days I’m sure. So official reads are stable MIBG, clean CT/MRI, clean marrows. What’s confounding this is Sam’s LDH, which normally is a good tumor marker, continues to rise and has been rising. It’s pretty non-specific so it could be an infection of some sort but it’s something we follow so if anyone has any ideas, we’re all ears so email or post a message with ideas!
Hematuria is pretty much fixed with high-dose protein and the hyperbaric chamber so that’s something that is great for Sam as well.
Headaches are still an issue but we have had Sam visit an accupuncturist at Childrens San Diego today as part of their integrative oncology program and he looks better than he has in weeks. Let’s hope it lasts. For those acupuncturists keeping score, the meridian in his spleen and gall bladder are out-of-whack so the therapy is aimed at aligning the energy there. Sam enjoyed it and actually wants to return for a 2nd session Thursday. On the meningitis front, CT/MRI were clean and all of the fungal cultures (aspergillis and cryptococcal etc) were/are negative. We are getting a gameplan with Dr. Sholler (Vermont) and Dr. Willert (San Diego) working together and should have that soon. Dr. Maris had recommended the IV fenrtinide study at CHLA so if anyone is doing that or knows someone that did that, please let us know. At the moment, we’re going to defer that decision until January since we think Sam needs a break from the road and that trial would require him being in-patient for 7 days out of every 21.
Thanks for keeping Sam in your thoughts and prayers. It’s been a few tough weeks, months but the 4-day break was good for us to just tune back into family stuff and recharge our batteries. Neil
Topics: Progress Reports | 11 Comments »
Nice Thanksgiving Weekend
By Margot | November 30, 2009
Since everything starts up tomorrow – school, work, hospital, infusions, blood counts, VMA/HVA from last week – I thought I ought to post that we had a great Thanksgiving weekend overall.  I stayed off of my computer for three straight days and it was very relaxing. The night before Thanksgiving Andy had the stomach flu something awful and was up the entire night sick sick sick. I was fearing the worst since the Monacos were coming here. But he popped up Thanksgiving Day as if it were all a dream.  Sam woke up feeling well and very happy to be off from the hyperbaric oxygen chamber for a day. He went over and played with the Bonebrake boys. His legs seem to be fine now, he even played a little catch/football on the beach with them. Then the boys went over to the Monacos for while before everyone came here for dinner which went off very smoothly.  We were all very thankful to be together and watching Sam (and Andy for that matter) perk up was fantastic. Sam is feeling well generally but is still having very bad headaches and sensitivity to light off and on so we have to give him hydrocodone and then he is fine.  If it gets very bad we give him morphine but coming off of morphine makes him very cranky. The rest of the weekend we hung out with Uncle Matt and Grandma Joan and played a lot of Apples to Apples. On Saturday we made gingerbread houses with the Monaco boys and that was a big giant mess but they all loved it.Â
Today we took the boys to the Chargers game. We have been promising since Andy’s birthday last year and we were finally able to go to the Chiefs game today. They had a ball. Sam had a headache when the game started and we thought we might have to take him home but a tylenol helped so much that he was dancing to the songs and doing the wave in no time. The score ended up being Chargers 45, Chiefs 14 so though there wasn’t a lot of drama, there was a lot of scoring on the Chargers part and that made the Hutchison boys very happy. I’ll post some pictures later this week. Afterwards we stopped at Belmont park and Neil took Sam and Andy on the roller coasters while I stayed in the car with sleeping Charlie.    The roller coasters have been a bribe for Sam to go to hyperbaric oxygen therapy since he is not a fan. He calls it “the chamber of doom.” He got that from one of the other patients.   They are so nice to him. One patient brought him some word finds and movies to pick from and they all let him pick the movie. He goes into this submarine looking thing and they ramp up the pressure and then pump 100% oxygen in there. Sam had one day with a lot of ear pain from the pressure but they slowed down “the dive” and it seemed to clear up. Anyway, we’ve been telling him since his pee is totally clear now, he can go on some roller coasters.  He loves the rides at Belmont park.  All of the boys said it was a great day. Uncle Matt came over for dinner and now Sam and Andy are in bed and Charlie is wide awake because he slept this afternoon.   If he has a nap these days I’m history at night because he stays up forever. Â
I’m overly tired and this post is probably rambling and full of typos. Sorry about that. Unfortunatley, we capped off our good day with Sam in a lot of pain from a headache so we had to give him some more hydrocodone before he went to bed. Ugh. Wish we could get to the bottom of these dumb headaches.
I’ll post more tomorrow when I have numbers and other exciting medical facts.
 Margot
Topics: Progress Reports | 3 Comments »
Breathe
By Margot | November 24, 2009
Sam had his first treatment in the hyperbaric oxygen chamber this morning. It looks like a little submarine and he was in there with two other adult patients who were very nice. Sam was pretty nervous to do it but watched Pirates of the Caribbean and gave me the thumbs up through the little window I was able to peek through. The other two patients in there told him they were nervous their first time but after that it just gets boring. I gave him his Harry Potter book and some homework (really when will I ever learn? ;-). It takes two hours and he was grumpy when he got out and learned we had to hit the hospital straight afterwards.  Since the hyperbaric oxygen chamber is at UCSD downtown we were able to stop at The City Diner for breakfast before heading to the hospital and Sam was cheered up by some awesome french toast and a fruit plate and some good songs on the jukebox. He’s decided that if he has to keep coming back for oxygen therapy, The City Diner needs to be part of the package.  We are at the hospital now awaiting blood counts and a therapy plan and then hopefully we will be off from the hospital for the rest of the week with only the hyperbaric stuff first thing in the morning tomorrow and Wednesday.
I have not been sure of what to post here the last few days. Neil and I have had some dark and despondent nights only to wake up to brighter and more hopeful days.  The range of emotions and the speed at which they change has been crazy, such that as soon as I think to post something, five minutes later I’m in a totally different state of mind.   Sam’s urine is looking better – almost clear. His shoulder pain is gone. His headaches and eye pain are better – though his eyes are still very sensitive to light. He was having trouble walking on Thursday and Friday but then yesterday and Saturday did better. His legs were hurting right above the knee. Yesterday he hit a few tennis balls with us and then went to watch Blake’s baseball game with Joe and then he and Joe watched the Charger game with Charlie while Andy went over to Jake’s to watch the game. All of the boys played a little kickball during the baseball game after they lost interest watching and I watched Sam run from the top of the bleachers and thought to myself, “Why of course he’s going to be fine, look at him.” Sam mostly stayed on the couch during the Charger game and didn’t get up and pass the football with Joe as is his usual but then after the game they got out the skateboards and Sam sat down on his and zoomed down the little hill in the courtyard and Charlie dove on his belly on his and zoomed head first.
Backing up, Dr. Maris called us on Thursday and said that the scans are stable from the last set of scans which were greatly improved from the previous scans (before the first MIBG). He said that there is nothing on the scan to correlate with his head or eye pain and he wanted us to do the spinal tap and rule out menigitis so that we can move on to the next therapy. He said that the CNS risk is only theoretical and we should rule it out if we can rule it out. So, with some trepidation we went ahead with the spinal tap on Friday. It was negative. While he was asleep we also did a bone marrow biopsy since we missed the one that was scheduled at CHOP for last Monday.  So up until now, I’ve given you all of the good news. Dr. Sholler called this weekend. Erica came in over the weekend and plated Sam’s cells in Dr. Sholler’s lab.     The marrow is very heavily involved. Sam’s LDH Friday was 2400 and his VMA and HVA were 24 and 31 respectively.  So, the scans were very hopeful but we are in a tight spot with the marrow. Back on the good news side, Sam’s platelets are 120 and red blood cells are high as is ANC. So he is eligible for several different therapies.  We’ve now progressed on several chemos so we are going to be thinking outside the box. Fortunately, my husband and our team of doctors and parent consultants have several out of the box options at the ready. I’ll post when we have an actual plan but Sam is feeling very well today though wants to be out of this darn hospital.
Charlie is sick today. He’s had the sniffles for a couple of days but yesterday he did the three year-old move of “I think I might throw up.” and then before I could move a muscle threw up all over everything. Last night when he went to bed and this morning when he woke up, I could hear that his whole head was congested and he said his throat hurts.  So hopefully he’ll start to feel better tomorrow and we won’t all come down with it for Thanksgiving. Andy is fine. His last regular soccer game was on Saturday. He made two goals and was named “Mr. Hustle.”  He has been so nice to Sam.  Sam’s been wanting to take a lot of baths lately, they make him feel comfortable and Andy’s been bringing him towels for pillows so he can get comfortable. Sam’s lost about six pounds last week though he’s finally eating again. I think it shocked Andrew to see him in the bath and he asked me, “Mom is Sam feeling weak?” I said yes, he is a little and Andy ran downstairs and dug up a metal extension pole that we have in the closet for cobwebs and stuff and ran it upstairs so Sam could use it as a cane.  It just about killed me.
I am resolving to be captain fun regardless of the treatment. I have had a very short fuse lately for my poor kids and I’m going to get it together.
Please keep Sam in your thoughts and prayers.
Margot
Topics: Progress Reports | 23 Comments »
Neil and Sam Home Tonight
By Margot | November 18, 2009
Neil and Sam are coming home tonight at 10pm. They were scheduled to meet with Dr. Maris at 12:30 tomorrow but we have decided to do it by phone as Sam is not feeling all that well. The scan is better in some spots and worse in others.  Sam has shoulder pain now and has been taking vicodin today. The odd thing is that the shoulder doesn’t show much uptake in the scan. He’s also still having head and eye pain on and off and is sleeping quite a bit. Neil said he’s not eating much and threw up once today. I talked to him and asked him how he was doing and he said, “not that good right now.”  I just want to get my hands on him. I’ve just been sitting here today waiting for the phone to ring and pacing.  The good news is that the CT was totally clear so we still have no soft tissue disease. His platelets are 120 and all of his main blood numbers look good. LDH is 1800 which is not good news.  We’ll talk with all of our doctors tomorrow and get a game plan for moving forward.  We are batting around several ideas and will probably get something started tomorrow.
Margot
Topics: Progress Reports | 12 Comments »
Neil and Sam in Philly tonight
By Margot | November 17, 2009
Okay, so I’m sure you did a double take at that title after yesterday’s early morning post. That’s what I get for lagging on the news. Sam woke up yesterday much much better and went outside to visit with his brothers without his sunglasses. He had a bit of a low grade fever in the morning but then was perfect all day yesterday. We figured we’d better see about getting him on the plane today since MIBG injections are only done on Tuesdays at CHOP and otherwise we would have to reschedule the whole week. The infectious diseases doc who we like a lot came by and gave us his blessing to go home on IV mirapenum and then Sheila, our savior nurse who helped us last time we needed to get out on a Sunday. arranged for Dr. Madigan to get the paperwork going, home health care to deliver the antibiotics and got us out by 4pm. Unfortunately because of the Eagles game there were no flights to Philly on Southwest today from San Diego so we had to drive up to Orange County airport to get Sam and Neil on a 10am flight. Neil and I must have called each other a million times yesterday trying to arrange flights and times and home health and figuring how to take everything on the airplane. Thank goodness for Maureen who watched the Charger game with Andy and Charlie yesterday.  Everything went smoothly this morning, there was no traffic and we go there in plenty of time.  It was tough to let them go this morning after the weekend we’d had but Charlie boy was with me and he made light of things yelling out a “Bye Sammy Dude and Bye Dad” the whole time they waiting in the curbside check-in line.  Sam loved having him along to say good-bye. He was back to his happy silly self yesterday and this morning.  I just had a sick feeling in my stomach driving away from the airport but Neil said that the flight went well – just a little eye pain to Phoenix and then Sam slept most of the way to Philly and they are now safely there in the Doubletree Hotel. They were coming in too late for the Ronald McDonald House tonight.  Tomorrow is the CT, Wednesday is the MIBG and Thursday Neil will meet with doctor Maris.  Please think good thoughts for scans this week.
I’m going to try and drum up some fun for Andy and Charlie this week. Andy is busy announcing to the world that he has made the All-Stars in soccer. I think he told his whole class today. He is so excited. I am balancing celebrating him and knowing how hard it is on Sam. I told him to go ahead and tell all the neighbors before Sam came home yesterday and he did just that. Knocked on doors to let people know. It was about the cutest thing.  Parent teacher conferences are this week. They always seem to fall on a scan week so that I’m not actually too worked up about them in light of what else is going on during the week. Vickie B. please send some good scanxiety vibes ;-).
The good news is that the Chargers won yesterday so you can guess who will be wearing his LT Chargers jersey tomorrow when he sees his Philadelpia doctors. 🙂
Margot
Topics: Progress Reports | 8 Comments »
In the Hospital with Fever, Head Pain and Eye Pain
By Margot | November 15, 2009
Sam’s headaches got progressively worse. Wednesday night he woke up crying in pain and holding his head. He went back to sleep with some tylenol and then Thursday we were in the clinic trying to find the cause of the headaches. His eyes hurt and were very sensitive to the light. We thought it might be a really bad case of sinusitis since there were no other symptoms. We also thought it might be disease progression since there were no other symptoms. We did a head CT in the clinic and it was perfectly clear. Sam wanted to go home and take a bath which seemed to be the only thing that helped with his head pain, leading me to believe it might be sinus pressure. We went home on pain meds and Lisa, our nurse who is a pro said to me as we were leaving if his neck hurts or he gets a fever, you bring him right back in. With the sensitivity to the light, it might be meningitis. I was wondering why she kept asking him if his neck hurt all day.  Anyway, he got home and threw up and then spiked a fever of 101.2 (not the super high usually associated with meningitis)  about 8pm. Neil brought him in to the emergency room. They didn’t want to do a direct admit because they thought the ER would be able to diagnose meningits much more quickly. He was feeling much better on the way to the hospital but threw up all over everything in the car so Bill and Vickie watched the Andy and Charlie (asleep) while I brought in more pajamas and clothes and sat in the ER room with Neil and a sleeping Sam.  They got Sam into a room right away. The ER was a pit of flu and swine flu and people thinking they had it. He had slept most of the day by the way.   I spent the night last there and he was feeling a little better but he was wearing Neil’s sunglasses all day even in the dark room and we didn’t turn on the lights all day. His eyes are really bothering him with any sort of light. He looks like Ray Charles. The doctors wanted to do a lumbar puncture to rule out meningitis but we don’t want to do a lumbar puncture because there are several papers showing that can spread NB to the brain and Dr. Modak recommended that we think twice about it. So we have been treating with Mirapenum for the past three days which will cover him if it’s bacterial. If it’s viral, then he just has to ride it out. He doesn’t have the high fever that goes with it or the telltale rash or the stiff neck or back pain. We did an MRI yesterday and it looked perfect - no sign at all of meningitis but a clean MRI doesn’t totally rule it out. So, we don’t actually know what he has. The infectious diseases guy is doing a bunch of blood tests and threw out several other possibilities today.  Anyway, he’s doing much better in terms of headache but has lots of eye pain with any light. I’m a little worried he’s becoming a morphine addict and I had to laugh when he said in his Ray Charles glasses, “Heey, when can I get some more of that medicine?” This afternoon he was pretty weepy and sick of being in there. It’s hard on him to know that Andrew’s going to his soccer game. I tried to interest him tonight in taking some guitar or music lessons and he angrily told me he wants to play sports.  He perked up after I read to him some from “Sheila the Great.” We started it yesterday and finished it today and my voice is tired but it’s good entertainment in a dark room with only a book light. Hopefully tomorrow he’ll be on his way out the door.    We cancelled his and Neil’s flight to Philadelphia tomorrow and we will try to shoot for Monday and reschedule all of the Monday stuff.  His urine was getting worse again after two days of just lying around and good platelets so who knows what triggered that.   It looks a little less red this afternoon though.Â
I’ll post when he gets sprung.
Margot
Topics: Progress Reports | 11 Comments »
Engrafted
By Margot | November 12, 2009
Sam’s stem cells have officially engrafted. His platelets today were 86 - up ten from 76 on Monday without any help at all from a transfusion! I keep thinking of when we collected those stem cells and how it seems like a lifetime ago. I looked back at my post from March of 2005 with little four and half year-old Sam and I’ve pasted below the part about his stem cells…..
“Sam and I just got back from The City of Hope Hospital (Northeast of LA) where we went for stem cell collection. It went very smoothly. He had surgery very early yesterday morning to put in the catheter, woke up like a bearcat from the anaesthesia as he usually does (he doesn’t like feeling disoriented), and after he got his bearings, they sent us to the donor room for collection. The donor room is a big room filled with a lot of beds and big, old fashioned looking machines with blood tubes winding in an out of different gears like a super long crazy straw. Sam was the only kid in the room but everyone was very nice and our nurse Terri, mother of four boys, gamely threw paper airplanes with us and helped us in our aim so we didn’t hit nearby patients. After about four and a half hours, we were finished for the day. Sam started with a white count of 91 (which is enormously high) and Terri said the color looked good and she thought we’d get a lot of cells. They had told us to plan for at least two whole days of collection. They need 5 million cells per something (kilo of body weight?) for the transplant and usually want twice that for back up. Sam gave, drum roll please,,, 68 million stem cells per whatever they needed in four an a half hours! We have six bags of stem cells which is awesome because they will come in very handy in case of relapse. The only catch is that we won’t know if the stem cells are clean (cancer free) for another four or five days. If they are, then we are done with collection. If not, then we have to go back and do it all again.
Dr. Boleton took out his catheter (which sucked but I won’t go into gory detail on that) at 6pm last night and we zoomed home. I was telling Sammy how brave he was and that he was an amazing little boy and I said, “Buddy you have no idea how amazing you are.†He answered, “Yes, I do mom, I’m _really_ amazing.â€
Boy that line, “they will come in handy in case of relapse” seems so innocent to me now. I don’t think I appreciated how very lucky we were. I do now though. I remember Neil asking Dr. Boletan to make sure we collected extra stem cells and she’d promised she would but there was no guarantee how many would actually be collected.
His urnialysis from today was up to 1900 red blood cells from 500 a couple of days ago. His urine is still clear but with a touch of light pink here and there.   We’ll up the hydration tonight. I also had him hydrated while we were waiting for counts in the hospital.   His VMA/HVA numbers were 13 and 11 this week but LDH was 1500 (double normal) today. So don’t really know what to think going in to scans. Sam is still having headaches on and off. They seem to be in the sinus area and go away with aspirin, which I hope is a good sign.   We’ve had a good day off today for Veterans Day. Met Meredith and Kelly at SeaWorld after the hospital. They’d picked up Andy and tried to pick up Charlie but he screamed his head off and stayed with Elizabeth until Sam and I came and picked him up after the hospital. Sam was not up for going to SeaWorld at all, said he’s getting sick of it but then as usual he had a great time when he got there and has been having a good time with his brothers this afternoon.  Neil is coming back from a business trip in Omaha where he’s been for the past couple of days. Sam wants to celebrate, he loves any reason to celebrate.
Please think good thoughts for our friend Erik Ludwinski’s platelets to start coming up on their own:
http://www.caringbridge.org/visit/erikludwinski He just did his first round of MIBG and needs good platelet thoughts and prayers. Also please keep Sal Vanni in your prayers as the Vannis figure out the next step for him http://www.caringbridge.org/visit/salvatorevanni/guestbook  Jack Bartoz is having surgery tomorrow, please keep him in your prayers as well  http://www.caringbridge.org/visit/jackbartosz and Patrick Chance is just finishing his first round of MIBG after having surgery last week https://www.carepages.com/carepages/PatrickChance
Margot
Topics: Progress Reports | 7 Comments »
One Week to Scans in Philly
By Margot | November 8, 2009
Sam stayed home from school for the most of last week. He was feeling fine but there were nine kids out in his class with some version of the flu and a couple of confirmed cases of swine flu. Also, we figured it might be good for him to take it easy for a few days anyway given the bladder issues. His bladder started to get worse around Wednesday and we went back into the clinic for some hydration and tried to talk to the urologist but since Dr. DeCambrie was out for the week, we had an uphill battle to get anyone to talk with us. Dr. Willert sent us home on home hydration but it seemed to be getting better before we even started the hydration and has been relatively clear for the past three days. It’s really odd because there doesn’t seem to be any rhyme or reason to what sets it off or what makes it better. Thursday we went to the consult at UCSD for the hyperbaric oxygen treatment.   Sam would have to do it every day after school for twenty days and be in this submarine like thing with what looks like a space helmet (but very light) on his head.   It does seem they’ve had very good results. We couldn’t get started on that until November 30th though and it has to be consecutive so it might mean little to no Christmas traveling.  We’ll cross that bridge when we come to it thought. It still needs insurance approval. Sam is not looking forward to it.
Sam did go back to school on Friday as his classroom seemed to less infected and the sub had cleaned it from top to bottom. He was very happy to be there and he went to Blake’s birthday party of Friday afternoon and had a great time.  We unhooked him from hydrations so he could do school and the party without the backpack and he brought a big water bottle. It seems to work out well.   Thanks Edmunds family for all your help with logistics.   Yesterday we went to the Picasso/Miro exhibit at the art museum and the boys really enjoyed it. They loved the little room in the museum where they could make their own art and hang it up. I’d tried to prep them on who Picasso was before we went and when Andy saw the paintings he said, “But Mom, how can this guy be so famous, it’s kid art?” We’re trying to figure out some good non-sports activities for a while, though I have to say that keeping Sam from running around while he’s feeling so well is next to impossible. He’s been in a great mood lately and aside from the bladder drama, it’s been great to have him off chemo for this long of a time. He just shines. We’ve been doing some board game nights and he is still a very funny Sorry player. He’ll yell out, “It’s my turn, it’s my turn” -  it’s always hard to tell who’s turn it is because someone always seems to be moving their guy in our games - Then Sam slying sneaks a look at the top card and if he doesn’t like what it sees, he says, “Oh actually Andy, it’s your turn.”  Nice brotherly love.  Sam’s doing well in school for all he’s missed.
Andy is doing well too. I kept him home on Tuesday when I thought maybe the whole school was going to come down with the flu but he went back on Wednesday and finished off the week. He did really well in his soccer game yesterday, scored two goals and did a little of what used to be his trademark dance when he was a little guy after the first one and is glad his team in winning mode after losing their first game last week. Yay Jake, he scored a goal yesterday! Hope he and Andy are tag team partners for years to come.
Charlie stayed home from school on Tuesday too only because both his brothers were home. He looked at me like I was crazy and said, “I’m not going.”  He is so darn cute. He plays soccer the whole time Andy has a game or practice. Yesterday he recruited Joe and Jake’s grandpa to play with him. He kept calling him “Big Guy.”   He’s discoverd the teenage mutant ninja turtles now and we are reliving for the third time everything Ninja turtle. Neil says he tells him about them as if he’s just discovered the dead sea scrolls.    He even uses the acronym TMT which cracks me up. I realized after reading over my last post that it sounded horribly mean. I didn’t actually let Charlie believe he was going to Legoland and then took him to get a shot. I corrected Andy right away and told Charlie we had to get some medicine but for some reason I think he still wanted to believe he was going to Legoland instead.  He asked me yesterday, “Mom, why is everything in our mind? You know when we lose stuff? Where is my mind?” This because his mother is constantly saying, “Where is that? I’m losing my mind!”
The boys have been playing a lot of Mario Winter Olympics on the Wii and are now excited for the Winter Olympics to start. Neil got it when Sam was in the hospital last. He keeps trying his best to beat the boys at all the games and they smoke him.
Sam and Neil will be in Philly one week from today for scans. Neil is going to take him this round and then I will take him back if we need to go again for whatever is next. Aside from having said his head hurts twice in the space of five days and giving us a heart attack, he seems to be feeling really well. Tomorrow he has a blood check early and I should have some numbers for you.
Margot
Topics: Progress Reports | 5 Comments »