irishfield Posted November 14, 2014 Author Report Posted November 14, 2014 Thanks folks! Been a wild three weeks here, with her hyped up on steroids and I've never seen her eat this much food. You'd think she was bulking up for chemo... that thankfully she doesn't need! Stereotactic radiation starts Monday.. thru Friday at Sunnybrook.
spinnerbaitking Posted November 16, 2014 Report Posted November 16, 2014 Been away from here for a while but sure em glad things seem to be going good for Jen, like they say keep kicking it's butt Tight Lines SBK
bigbuck Posted November 16, 2014 Report Posted November 16, 2014 Keep the cupboards stocked with her loaded up on the 'roids. I was eating 5 MEALS a day + snacks when I was loaded up on Prednisone. Keep her eating good food so her body can heal with the radiation. Good luck!!!
irishfield Posted November 19, 2014 Author Report Posted November 19, 2014 (edited) 2, of 5, days of radiation under her belt. Says "she'll be a little crispier come Friday.... just like the way I like my bacon"! I think humour might continue to get her further than anything they've gave her so far in all of this ! Edited November 19, 2014 by irishfield
lunkerbasshunter Posted November 19, 2014 Report Posted November 19, 2014 I can't get over how tough that girl is. All our thoughts and prayers are with her. Cheers
irishfield Posted November 21, 2014 Author Report Posted November 21, 2014 (edited) Well hopefully she can keep up the laughs and the energy... finished her last Stereotactic head radiation this afternoon and is on the way home. We learned on Wednesday that the "nothing that concerns me", from Dr. Razak last week, went out the window. The Radiologist report shows that it's not A spot in her lung, it's two lesions side by side. Consult request has been sent to PMH to do High Intensity Radiation on those spots now as well. Still waiting for the call... Edited to add: She's home... 5 days of high intensity radiation done and still in good spirits. Waiting for Princess Margaret to call with a date for her lungs and with our luck it will be Tuesday or something... as to add insult to injury the m-in-law is going in for an expedited triple or quad bypass on Monday and the hospital is about 4 hours from our place.Oh well I've been told by a good friend that it's all just a test. I just wish someone would supply the study material ! Edited November 22, 2014 by irishfield
irishfield Posted December 2, 2014 Author Report Posted December 2, 2014 Seems someone lost the key to shut this Roller Coaster down... Lots has gone on in the 3 or so weeks since the last update, that contained a "nothing that concerns me" comment from Doctor Razak. There has been many trips to the city for imaging, consults and such that we've kept pretty much to ourselves since then, but to keep it simple.... Jennifer received her Stereotactic Radiation on her skull / brain area where the last two tumours were removed on Oct 22nd, during the week of November 17 to 21st, and everything seems to have went well with that procedure. On the Wednesday, during that week, she got a call from Dr. Razak to tell her it wasn't "a" spot on her lung. The Radiologist's report came back to show it's actually two lesions side by side on the back side of her left lung, right against her heart. He was to fax a requisition request next door to Princess Margaret, so Jen could see another Oncologist over there as soon as possible. Last week she saw Dr Brade (Radiation Oncologist) at Princess Margaret Hospital to go over what they may, or may not, do about those. Choices being surgery, 8 day or 20 day radiation... with 20 day being the most likely choice to try and minimize damage to her heart muscles / tissue from the process. Yesterday I (We had to leave Leah at home to find her own Doctor.. Pleurisy again) took Jennifer to St. Mike's for her post op check up. Neurosurgeon (Dr. Spears) is very happy with her recovery approximately 5 weeks post op from her craniotomy / tumour removal and that the Radiation Oncologist at Sunnybrook took it from there and did his thing quickly. He was not happy to hear we were off to another hospital today for her lungs, but very reassuring to have both his cell phone number and email address if we need him on short notice ever again. Jen was also happy to get the pictures off his phone... that he took during her surgery to remove her tumours! Leah and I had seen them the day of her operation, but seeing a "tennis ball" in a gloved hand really makes you think about how that can all fit in an already occupied space! Today Jennifer had her Radiation CT Simulation procedure at Princess Margaret, to pin point the target for her radiation treatments on her lung tumours. She got 4 tattoo dots on her chest for the machine to be lined up on and we were on our way home. Still don't know whether she's getting 8 or 20 days.. nor do we have a schedule, which is a little disappointing, but I'm sure we'll get a call in the next few days. No call from the Radiation Oncologist yesterday or today... and considering her CT went ahead for radiation I'd say the surgery option is no longer in play. All we do know is, that if it's 20 days, it will go right through Christmas and New Years. Wayne and Leah
esoxansteel Posted December 3, 2014 Report Posted December 3, 2014 I can't get over how tough that girl is. All our thoughts and prayers are with her. Cheers X2 her family support system is truly amazing, and truly defines what we as Canadians try to instill in our children FAMILY FIRST, Wayne and Leah and the rest of your immediate and extended families are an inspiration to us all, along with a great medical support team, and a very resilient daughter in Jenn, who always seems to look at the positive side of things, Thanks for keeping us informed and God Bless Jenn and you family
bigbuck Posted December 3, 2014 Report Posted December 3, 2014 Jeez, the saga continues. My thoughts and prayers will continue for that amazing gal of yours and I hope your good lady gets better soon.
Rich Clemens Posted December 3, 2014 Report Posted December 3, 2014 It's a long road I'm sure and praying for all the best for Jen and all of you
Whopper Posted December 3, 2014 Report Posted December 3, 2014 (edited) Hang in there Wayne you've been a great father to an amazing daughter. Jen's strength and resilance has been spectacular. Thoughts and prayers continue Edited December 3, 2014 by Whopper
ketchenany Posted December 3, 2014 Report Posted December 3, 2014 Wayne, you and the family are incredible. I thought I went trough a lot with my wife having colitis and small children and it continued for 10 years (78-89) until they decided it was enough and operated with a 50/50 that it would work, it worked. I know the feeling, always hoped for the best, the only thing we can do. take care. A
NANUK Posted December 3, 2014 Report Posted December 3, 2014 Thanks for the update, we have you in our thoughts and prayers.
Tomcat Posted December 3, 2014 Report Posted December 3, 2014 Wayne: I just wanted to say thanks for sharing Jen’s powerful strength. My own daughter, at age 42, underwent a left breast mastectomy and simultaneous reconstruction in early August 2013. After her surgery, she did 6 chemo treatments and she has completed 16 of 18 Herceptin treatments. This thread has helped me immensely in dealing with the mental anguish of having a child afflicted with such an ailment. Thank you. Kudos to Jen and to you and Leah for being so strong and so inspiring. Jay
irishfield Posted December 3, 2014 Author Report Posted December 3, 2014 Strength is always in numbers Jay... why I share it when I can and typing it out and sending it out seems to lift the weight off the shoulders here from time to time. Wishing your daughter all the best! ..and thanks to everyone else, including Stonefish and his generous offer last night.
irishfield Posted December 20, 2014 Author Report Posted December 20, 2014 17 days since the last update and we've sat here waiting and waiting for a phone call, since Jen's CT Sim and tattooing on Dec 2nd, to tell us what her Radiation schedule is and of course wondering how fast these lung "lesions" are growing. She was told she would go right through Christmas with radiation and we put family "Christmas"off 'till Jan 25th because of same. She even called numerous times to Princess Margaret's radiation department asking when... and each time they pretty much told her "don't call us.. .we'll call you!". We finally had enough with the waiting, and the inability to make any plans, and we did some googling and found an email address for her Radiation Oncologist, as he wasn't "in the office" this week. He amazingly replied and was upfront and honest... someone dropped the ball. At their "Met Rounds" meeting (on Dec 1st with various Doctors) it was decided that they would put Radiation on hold until Jen saw a surgeon for a consult, especially with the two spots so close to her heart. Unfortunately.. nobody told Jen this information, or their own Radiation department for that matter with Jen having her CT Sim and tattoos put on her chest to line the machine up. And the worst, nobody had the Thoracic Surgeon make an appointment for her either! With things kind of sorted out, on Wednesday morning we were told the best that could be done was Jan 5th for a consult and, to keep it polite, we stated categorically she wasn't waiting that long to let things grow and then have this guy say "oh.. go ahead with radiation". Fast forward to Wednesday afternoon and Jen suddenly had an appointment to see Dr. Waddell at Toronto General for 10am this morning. Dr. Waddell is the Head of Thoracic surgery at Toronto General. I must add... his female resident was the most versed ever on the contents of Jen's four inch thick file that we've seen to date. She recited it.. didn't even have it with her.. right back to Jen's Crohn's surgery in 2008. Dr Waddell himself shared the most information I think any Doctor, other than maybe Jay Wunder has to date. Up front.. honest and laid it all out in plain English without "prettying" anything up. She has two spots about the size of the front half of the typical male thumb, as of late November's CT anyhow. They are behind her lung.. tight to her heart. They may even be attached to the outer protective layer of the heart, but he is very confident he can remove them with minimal invasive video surgery. His plan is to get the camera in first and if he sees something different than the CT is showing then Radiation may be back on, but he's hoping that on lung deflation the lesions will move away from the heart on the lung and he can easily remove them. IF that happens... it could be a short 10 minute procedure once inside. If it doesn't happen... well he and Jen will cross that bridge if necessary. Jen is booked for a new CT January 2nd to make sure nothing much has changed and if it has then surgery may go out with the bath water as well. A 4 hour Pre-op is booked for Jan 5th and Surgery itself will be on Jan 6th, "unless she gets bumped by a transplant patient". Flash backs of 8 days of waiting at St. Mike's in October, while listening for Air Ambulance helicopters quickly filled the room.... Thanks for your ears... now we scramble here as it looks like Christmas might be back on for it's regularly scheduled date! Wayne and Leah
Loonietoon Posted December 20, 2014 Report Posted December 20, 2014 Wayne, I don't know what else to say but hang in there for Jen & Leah My prayers I keep working on my Friend
HTHM Posted December 20, 2014 Report Posted December 20, 2014 Thanks for the update. You and yours are still in our prayers.
moemoe Posted December 20, 2014 Report Posted December 20, 2014 Strong family and even stronger individual. I hope you and your family have a truly enjoyable and blessed christmas together
okumasheffield Posted December 20, 2014 Report Posted December 20, 2014 "someone (medical) dropped the ball"? WTH is wrong with the health system we have here
Rich Clemens Posted December 20, 2014 Report Posted December 20, 2014 Sometimes ha just have to take matters into your own hands to get things done. Good thing you followed up or,who knows how long things would get strung out. All our best folks.
irishfield Posted January 5, 2015 Author Report Posted January 5, 2015 Toronto General has again proven itself to be the most efficient hospital in the past 5 years. ~ 4 hour pre-op completed with a never ending rotation of nurses, anesthesiologists and staff. Including a pre-surgery consult with physio and an Xray. In at 10:30.. out at 3:15 with no waiting to see anyone. Can only hope tomorrow goes just as smooth to remove her two lung tumours.
Pikeslayer Posted January 6, 2015 Report Posted January 6, 2015 Git r dun Jen!!! Best wishes & prayers from ours to yours.
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