bucktail Posted June 8, 2015 Report Share Posted June 8, 2015 Excellent news , always thinking of you and your family!! Link to comment Share on other sites More sharing options...
irishfield Posted June 12, 2015 Author Report Share Posted June 12, 2015 Jen got an automated phone call out of the blue the other night, reminding her to be at her Friday 8:15 AM MRI at Sunnybrook. Good thing they reminder call, as nobody mailed or phoned to tell her this was happening. Yesterday Dr Sahgal called Jen to say he wanted to see her next Wednesday. Leah and Jen made the decision to go last night vs trying to get into the city this morning in the rain. After Jen spent 2.5 hours packing (OCD and morphine..) they finally got in to the city last night at about 2am.. got to bed at 3 and then had some stupid alarm going off every hour in Jen's power panel cabinet. Up at 6:55 and across the city for Sunnybrook. Jen had her head MRI and while that was happening Leah went looking for Sahgal and managed to get him to see Jen shortly after the MRI, to at least save one trip and an extra day in the city. "All looks good" is all they got from him in the waiting room and "I'll book another scan and see you in about 2 months". So GOOD news there and now the wait for everything else she's having scanned on Tuesday. Lungs, Lumbar sacral spine and another head MRI at Sinai for their tracking. Bad news is her pain that revolves around her body is so severe, especially when it's in her spine, that she's sometimes taking 60 mg of slow release morphine per day and additional 1 or 2mg hydromorphone tabs as needed in between just to dull the pain. That would put any of us out like a light. Thankfully we have my buddy Dr Helt coming by the house regularly and Rob called Dr Razak and had the Lumbar spine CT (or MRI) added onto Tuesdays schedule to rule out that there is nothing new going on there and that it's just the Pazopanib pills that are causing this as a side effect of the drug. Hope like hell it's the drug. Jen is doing the cancer walk tomorrow night in the city with some of her gfriends. Hopefully with one of them or Leah pushing Jen in a chair, but we know how stubborn she is so I'm sure she'll at least walk the last little way of the victor lap. I imagine they'll be staying in Jen's apartment until Tuesday, as Jen can't handle much extra moving around, and I'll be driving down to Mt Sinai for the Razak appointment on Tuesday afternoon. Will update again once we're back from that.. could be Wednesday pending Jen's ability to travel. Link to comment Share on other sites More sharing options...
ketchenany Posted June 13, 2015 Report Share Posted June 13, 2015 Spirits up Wayne, a lot of thoughts coming your way. One though one you have there. maybe you can get one of the Manzone boys to do the driving, they were really good behind the wheel and give you guys a break Link to comment Share on other sites More sharing options...
irishfield Posted June 13, 2015 Author Report Share Posted June 13, 2015 If any are so inclined, this is Jen's donation page for the Relay for Life tomorrow. This will be the 5th consecutive year that she's walked, all while fighting Ewing's Sarcoma. Some years she's walked both in Toronto and Midland. http://convio.cancer.ca/site/TR/RelayForLife/RFL_ON_odd_?px=4481060&pg=personal&fr_id=17784 Link to comment Share on other sites More sharing options...
irishfield Posted June 17, 2015 Author Report Share Posted June 17, 2015 (edited) Well I'm glad you folks all kept hoping! No new signs of the disease anywhere that was scanned, including her spine, after 10 weeks on this nasty drug. The fair sized spot that they've been monitoring on her left lung looks like a plant that's been attacked by bugs. March's CTs shows a solid mass and todays CT appears as being partially eaten and full of holes. Her Oncologist was pleasantly and honestly surprised by that, as there is absolutely no data or known history when using this drug on Ewing's! Since it appears this Pazo drug is working, she will stay on it but her Oncologist has cut it back by having her go 3 weeks on and 1 off, instead of full time. Starting tomorrow she's taking her week off so this should tell us by weeks end if it's what's causing the extreme pain for her. Edited June 17, 2015 by irishfield Link to comment Share on other sites More sharing options...
spincast Posted June 17, 2015 Report Share Posted June 17, 2015 That's just awesome. ! Great news! Link to comment Share on other sites More sharing options...
okumasheffield Posted June 17, 2015 Report Share Posted June 17, 2015 Great news! Link to comment Share on other sites More sharing options...
bpsbassman Posted June 17, 2015 Report Share Posted June 17, 2015 Great, great news Wayne. Let's hope that pain goes away now. Link to comment Share on other sites More sharing options...
Whopper Posted June 17, 2015 Report Share Posted June 17, 2015 Good to hear Jen is getting a break Thanks for sharing Wayne Link to comment Share on other sites More sharing options...
fishnsled Posted June 17, 2015 Report Share Posted June 17, 2015 Great news Wayne. Hopefully the break will give Jen some relief. Link to comment Share on other sites More sharing options...
bigbuck Posted June 17, 2015 Report Share Posted June 17, 2015 Great news Wayne!!! Good to hear that although it is hard on her, the new drug is kicking some butt in Jen's body. Link to comment Share on other sites More sharing options...
irishfield Posted August 1, 2015 Author Report Share Posted August 1, 2015 (edited) Amazing and unfortunate how quickly things can change in just 6 weeks. Jennifer is days, possibly hours away from the inevitable as her body shuts down and the Sarcoma has taken it over. Leah and myself have been taking turns sitting with Jen 24 hours a day and the other two kids are filling in when they can. She hasn't eaten or drank anything for at least a month. Blood transfusion and saline iv's for re hydration have made no difference, and even if they did the Sarcoma is showing up at C3/C4 as well as her pelvic / rib area of her spine. She now has a hospital bed in our front room and stronger pain meds have made her more comfortable. All other medications have been stopped and the focus is on no pain and dignity, and we've filled out the DNR forms. We are not available for phone calls; we want all our time to be spent with her. I welcome emails and will respond if necessary when I can. Only medical professionals and our own small immediate family is allowed inside the house now. It is better if everyone remembers her happy smile, instead of what she looks like now. We're not looking for any sage advice, as we've had 5yrs to run this through our heads at every twist and turn that she took with her inspirational fight. I just wanted you to know that her journey is almost over and she will soon be pain free. Thanks for holding our hands, Wayne and Leah PLEASE - NO posts on facebook, Jen has friends that still don't know that are "friends" of Leah's. Edited August 1, 2015 by irishfield Link to comment Share on other sites More sharing options...
lew Posted August 1, 2015 Report Share Posted August 1, 2015 Honestly Wayne, I wish I had the proper words to say to you but I don't. This is such sad news but at least her pain will be over. You guys are in my thoughts. Link to comment Share on other sites More sharing options...
Big Cliff Posted August 1, 2015 Report Share Posted August 1, 2015 God must need a special angel by his side. Our thoughts and prayers are with you all. Link to comment Share on other sites More sharing options...
ketchenany Posted August 1, 2015 Report Share Posted August 1, 2015 Honestly Wayne, I wish I had the proper words to say to you but I don't. This is such sad news but at least her pain will be over. You guys are in my thoughts. I'm in the same boat a Lew here Wayne. She fought long and hard, very brave girl. Link to comment Share on other sites More sharing options...
Bernie Posted August 1, 2015 Report Share Posted August 1, 2015 So sorry Wayne. She has fought an amazing fight and we all have been rooting for her. My heart goes out to you and your family. Link to comment Share on other sites More sharing options...
ecmilley Posted August 1, 2015 Report Share Posted August 1, 2015 My condolences wayne Link to comment Share on other sites More sharing options...
Terry Posted August 1, 2015 Report Share Posted August 1, 2015 we are all with you in our thoughts..... Link to comment Share on other sites More sharing options...
bpsbassman Posted August 1, 2015 Report Share Posted August 1, 2015 Jen is one of my true heroes. She has inspired me so much over these last 5 years. My thoughts and prayers are with you all. Link to comment Share on other sites More sharing options...
farsider Posted August 1, 2015 Report Share Posted August 1, 2015 I've followed your family's endeavour with hope and sadness. Amazing what she has gone through and the spirit and grace with which she has dealt with it all has been nothing short of inspirational. Thinking of you and your family, Mark Link to comment Share on other sites More sharing options...
Steelheadphycho Posted August 1, 2015 Report Share Posted August 1, 2015 God bless you and your family I'm sorry Link to comment Share on other sites More sharing options...
Ralph Field Posted August 1, 2015 Report Share Posted August 1, 2015 God must need a special angel by his side. Our thoughts and prayers are with you all. I cannot say it any better than Cliff ! So sorry. Link to comment Share on other sites More sharing options...
2 tone z71 Posted August 1, 2015 Report Share Posted August 1, 2015 Wayne and family ..my thoughts and prayers are with you this weekend ..you are some of the strongest people I know ..so sorry Link to comment Share on other sites More sharing options...
npt1 Posted August 1, 2015 Report Share Posted August 1, 2015 Very sorry about the sadness and pain your family is contending with. Words are hard to find to express our condolences to you all. You are in our thought and prayers. Rick and Dianne. Link to comment Share on other sites More sharing options...
bow slayer Posted August 1, 2015 Report Share Posted August 1, 2015 I have been following this post from the beginning hoping for a miracle and a better outcome because if anybody deserved one it was her.She is an amazing person as are you and your family . Her and your families strength and spirit throughout this has been incredible. I wish i could offer more than my thoughts and prayers. Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now