Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 Maize Hello everyone, I'm an oldie here, but I wanted to update all of you that know us on Sam's situation. We went back to Dr. Noonan in August to talk about what we should do for Sam's foot. He (Dr. Noonan) has heard that Dr. Ponseti has been having some success casting the older ones for relapse and was willing to give it a try on Sam even though he hasn't casted a 4 yr. old before. We talked about the whole casting routine and my husband and I left not feeling very sure about it. Instead of making a follow-up appointment to start that, we decided to talk to Dr. ponseti about it to see what he said. Well, I've been corresponding and talking to Dr. Ponseti, sending him pictures of Sam's foot and such. He did confirm that it is starting to turn in. But, he really doesn't think that Sam would be a good candidate for recasting. Sam had had a heel cord lengthening as a 4 month old before we went to Dr. P and he still has quite the nasty scar from that. Dr. Ponseti thought he had too much scar tissue to work with and that it wouldn't stretch like we needed it to. Dr. Noonan had mentioned the same concern. I told Dr. Ponseti that if he said the word, we would be in Iowa ASAP, but he said he thought surgery was our best option and that Dr. Noonan would be excellent for that. So, I guess Sam will definitely be having surgery. Definitely another heel cord lengthening and a possible ATTT. Dr. P also mentioned that perhaps Dr. Noonan could help the scar that he has to look better than it does at the moment. I don't know how they do that though. When, I don't know quite yet. Sam just started k-4 and so we were thinking over the Christmas holidays. I'm a school bus driver so we would both be out of school then. If anyone has any tips on a 4 yr old having surgery, let me know because we're dreading it to say the least. On a different note, our other little guy has just started walking. He's 10 months old now and esp. since Sam was 14 months when he started walking -- well, Jake just looks way too little to be doing that. It's lots of fun though. The boys really enjoy each other. I hope that continues. Just thought I would let you guys know. I lurk every now and then on the site but I'm not getting mail due to lack of time to read it all. I hope all of you are well. Suzanne in WI -- mom to Sam 4-19-00 left clubfoot Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Deb, I am Praying for Joe's appointment on Monday. Also I sure wish they can find out why Dani is still having the headaches. The poor girl. Your poor mom!!! I am not possitive, but I do believe that the type of chemo she will be on will cause hair loss. I get two wig magazines in the mail constantly and they both have very-very reasonable prices on thier wigs. Even cheaper then the ones that advertise specifically for chemo patients. They also have web sites and you can go to them and order the catalog as well as look at thier prices. One of them is called a Young. Thier web site is http://www.paulayoung.com The other is Beauty Trends. Their web site is http://www.beautytrends/com Hope this helps her. Your mom needs to make it a point to ask for samples for any drugs they want to give her. When it comes to stuff like that no one should be proud. The doctors get samples all the time. My Prayer are with your whole family. And for you Deb, who has a very big plate to handle. God Bless, Ingrid > Joe goes monday for his first post op chemo appt. , we are praying that all stays good news!! > He has to go Sept 7th for the nerve study , but I am pretty sure the neuropathy is just caused by the chemo and not the syrinx ( we can hope cant we?) > He is feeling pretty good , other than the neuropathy and some twinges in stomach but we are saying HECK its just normal twinges, and not even thinking about anything else ( umm yeah right ) > Dani went to the neurosurgeon for her first post op visit today , they have set her up to have another MRI on Sept 10th to see if they can figure out why she is having the headaches, > Also gave her a note for school that says she cant carry backpack or gym for at least 3 months ( no not carry gym lol you know what I mean) > As for mom she went to the oncologist today first time since her diagnoses ( this time) > And we found out that she has squamous cell(Lung) cancer tumor in her mediastinium area, inoperable. > They are going to start chemo on Tuesday, the oncologist said that the chemo will not cure it , but will arrest it , hmmm does this mean then mom will have to be on chemo the rest of her life?? > The chemo she will be on is Taxol and Carboplatin, she begins Tuesday and then goes every 3 weeks, for she thinks they said 10 treatments?? > I have questions , like she was recently diagnosed with Congestive heart failure , how is she to combat becoming dehyrdrated during chemo, since if she drinks to much the CHF kicks in?? > Will she definately loose her hair ? And how much do wigs run?? She isnt a vain woman by any means , but she is very upset over the thought of this, mom and dad are on a fixed income and cant afford much extra's , also they have no prescription coverage , I told mom to let the doctor know so maybe they will give her anti nausea samples???????? > One of the drugs she is going to be on is platinum based so she will have the cold issues ( not eating /touching cold things ) like oxaplatin . > Mom is VERY independent and not one to listen to others lol. > I told her she MUST do what the docs say, like drink etc > I also told her that ultimately the decision to continue chemo will be HERS and no one , not my father , not my siblings, not myself , can or will force her to do it . > My mom and dad have been married for 57yrs , and she is more worried about dad being at the chemo place for 6hours with her than she is for herself > I realize that this is the Colon cancer list but I feel more like family here so I hope yall dont mind me ranting here. > > Me?? I still need to dye my hair , my driving is coming along slowly but surely havent hit anything so thats a GOOD THING!!!!!!!!!! lol still havent left my neighborhood yet , I want to get totally comfortable first lol > Thanks for listening > > Deb > > > > 33yrold husband Joe, was diagnosed with CC in Sept, > resection on Sept 27th 2004 > found mets to the abdominal wall lining 3 lymph nodes involved > open wound from infection until Jan 2005 > Ileostomy reversal Dec 7th 2004 > Chemo regiment begun Jan 2005 > 5fu/levorican/Oxaplatin/ Avastin added Feb 14 2005 (Happy Valentines > Calcium Magnesium added for the Tingles Feb 28 2005 > Ct Scan done March 23rd 2005 , 16 millimeter cyst like object on liver found > April 1 2005 PET scan done awaiting results > April 11 PET SCAN SHOWS NED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! > May 9 Plateletts are low 75,000 > > > > > > --------------------------------- > Start your day with Yahoo! - make it your home page > > Quote Link to comment Share on other sites More sharing options...
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