- I wake every morning as I have for the last 2 year in fear for my daughters existence. They're my love, my life and all I have of their Father since he passed of GBM (Brain Cancer) just March last year.
- Their sick livers deemed Cryptogenic until just a few weeks ago. How he would have loved to be here to support them (and me) but sadly he had to take his leave staying with us way longer than he was meant to.
- A strong and articulate man who knew his brain was melting under the weight of he cancer that was consuming it. He should have passed days before he did but his huge heart wouldn't let him go......his last words were 'love you' as he looked into my eyes. His health professionals couldn't understand why he hung on......our girls and I did.....he loved us way above the pain and suffering he was going through.
- I know he's watching over his girls while my heart still breaks for all 3 of them....
- My family......my heart......my loves xxxxxx
Hi. You really got to read this article and contact Dr Kenneth Cox. Vancomycin is doing wonders for my daughter. http://stanmed.stanford.edu/2011spring/article6.html
This artice was amazing and inspiring, I just forwarded it to my doctor.... thank you!
beautiful
Thank you for sharing. The photos were sweet. God bless. Xx.
Many thanks to all......it's a strange and quiet comfort to know that there are those understanding the weight that travels with me in the every day........My life has become more solitary than I would have imagined and my friends replaced by Lakota and Jo-Dene's Specialist Medical Team.
Lakota was transplanted December 6th 2010 and on life support for the following months. Every sentence started with "If Lakota survives...." while her twin sister watched on knowing she suffers the same Genetic fault...
We had no idea Lakota was ill.....no yellowing of the skin but was sleeping more and more. Our family Doctor suggested Leukemia and all appropriate tests were ordered. Leukemia wasn't the answer but the trade was 'bad for bad', her liver was totally Cirrhosed and (EOL) at age 14.
Workups began to prepare for Transplant (Tx) and Lakota was on the Tx list just 4 days and not expected to survive......
She is here with me while the future for Jo-Dene holds Tx without doubt.
Chuck (their Dad) suffered a Grand Mal Seizure January 10th 2011 and diagnosed with GBM and given 12 months to live.
Our lives have been a train wreck pretty much ever since.....
I do thankyou on our behalves for your support and kindnesses......Blessings all xxx
Hi Ben Y
I have read this article and am very hopeful after reading it. I have forwarded it to my son's gastro team as I see it is a recent paper and appears very positive which is promising as my son is currently in a comfortable and stable period and early stage PSC. I will let you know the response from his doctor. Thank you so much for passing this on. I'm new to this site so I hope I'm replying to the right post. Rosie
BenY said:
Hi. You really got to read this article and contact Dr Kenneth Cox. Vancomycin is doing wonders for my daughter. http://stanmed.stanford.edu/2011spring/article6.html
I'm desperately thankful to all for the support.....quietly....I'm overwhelmed.......xxxxxxxxxx
Hey to all......it's been a while since I've been on here. Last Friday marked the first anniversary of my husband passing and unfortunately it also found Lakota hospitalised. A stomach bug put her in hospital and she was so desperately ill. There were fears across the board from the Gastro and Tx teams for her health and safety..
A colonoscopy was ordered and unfortunately they found the UC is worse than when discovered in December. It seems now they feel there is only two choices for Lakota now as the two drugs available created extreme reactions in her (Mesalazine and Osalazine).
She has to be at hospital for Iron Infusion tomorrow at 11 am and then a meet with the Teama as 1.30 pm.
As far as I am aware the 2 options are a drug called Infliximab or Colectomy.
Please if anyone has any knowledge of the drug or the procedure....I would ask that you please let me know.
My only concern is that the 'findings' from the colonoscopy states......... "Case reports of successful use Infliximab hence worth discussing with Lakota and Transplant Surgeons expecially as prospects of successful IPAA post colectomy is poor......
Hugs and care to all................Toni (Teddy)
Teddy, I have pretty good info on colectomies. I had one in Dec. 2006.That cures the UC, but life with a jpouch is not 100% a bowl of cherries. If you want more details, I'll be glad to help.
I hate that your daughter has to fight both UC and PSC at the same time. That takes a lot of heart (and guts-sorry, could not resist.)
I am not sure what it meant by "successful IPAA post colectomy is poor"
Jeff
Teddy said:
Hey to all......it's been a while since I've been on here. Last Friday marked the first anniversary of my husband passing and unfortunately it also found Lakota hospitalised. A stomach bug put her in hospital and she was so desperately ill. There were fears across the board from the Gastro and Tx teams for her health and safety..
A colonoscopy was ordered and unfortunately they found the UC is worse than when discovered in December. It seems now they feel there is only two choices for Lakota now as the two drugs available created extreme reactions in her (Mesalazine and Osalazine).
She has to be at hospital for Iron Infusion tomorrow at 11 am and then a meet with the Teama as 1.30 pm.
As far as I am aware the 2 options are a drug called Infliximab or Colectomy.
Please if anyone has any knowledge of the drug or the procedure....I would ask that you please let me know.
My only concern is that the 'findings' from the colonoscopy states......... "Case reports of successful use Infliximab hence worth discussing with Lakota and Transplant Surgeons expecially as prospects of successful IPAA post colectomy is poor......
Hugs and care to all................Toni (Teddy)
Hi Jeff......it saddens me to pass on that my daughter Lakota passed away suddenly April 19th. I am utterly gutted and Lakota's twin sister has been left shattered at the loss of her 'other half'. All she wanted was to lie in her sisters arms one last time before saying goodbye to her 'right side'
Lakota's funeral was on April 26th...the day the Conference started I so desperately wanted to attend. I would dearly love to attend next years as Jo-Dene suffers the same ills.
The girls have a Facebook page Lakota and Jo-Dene Connell Medical Support if anyone would care to take a look at my beautiful two.
The love of Lakota's life was left in just 25 hours to kiss his beloved Lakota just once that will have to last him forever. Over 300 people attended Lakota's Life Celebration, she was much loved and well known for the delightful young lady she was.
The reported cause of death was Multiorgan failure, Massive inferior venous hepatic and portal vein thrombosis. Sclerosing cholangitis colitis and Liver transplant immunosuppressant therapy...
I personally believe it to be an absolute 'Crock'...
Do we have a Doctor onboard. I would love to have a private conversation....
I have few more words than those that were whispered in my ear by a Senior Surgeon..."It shouldn't have ended this way"
105-IMG_2082.JPG (1.86 MB) 106-IMG_0076.JPG (1.83 MB) 107-Lakotasstory1.jpg (89.1 KB)
I apologise if the pics offend in their reality.....it's 3 of so many I have taken of Lakota over the years whilst hospitalised and I'm so glad I did.....My Angel
Teddy, so sorry about Lakota. There is a lot of love in those pictures.
Jeff
Teddy said:
I apologise if the pics offend in their reality.....it's 3 of so many I have taken of Lakota over the years whilst hospitalised and I'm so glad I did.....My Angel
Teddy - my deepest sympathies for Lakota. Her and Jo-Dene seem so brave to me. In my opinion, those photos are beautiful showing a sisters love. I got choked up looking at them and can only imagine how you and your family feel. Lot's of love and positive thoughts to you and Jo-Dene. I know Lakota is looking down upon us from above.
Scott
Dear Teddy-
I am heartbroken for you and your daughters. The photos are beautiful. Wishing you both some peace.
Teddy my deepest sympathy goes out to you and your family. I’ve followed your posts overtime. To read that your daughter had passed in April brought me to tears. My heart felt such weight. Know that I’m praying for your comfort, and sending thoughts of encouragement and peace to your other daughter. With my fiancé having PSC and UC as well, your girls hold a special place in my thoughts (as odd as that may seem coming from a stranger). You are doing an amazing job in voicing their story; the strength of your soul seems to be beyond measure. May your heart find comfort and peace through this painful time.
Many thanks for the responses...they have moved me to tears although it seems to be almost a permanent state for me recently. It's the strangest thing.....most don't believe the events of my family in the past couple of years. It makes me sad but it IS our story and I hope things slow down as I'm sure we have suffered enough.
If I was a God fearing woman I may take solace in the fact that Lakota is safe in her Fathers arms now....free from pain and painful decisions but with all that has happened I can only be confirmed that there is no greater being, otherwise he would not have allowed my husband and my daughter suffer so. Nor would he have taken two of my three most precious possessions.
My girls have been the most brave souls I know having lost their Dad just a year ago and now Dene has to bear the weight of losing her twin.
I am proud......so proud and want the world to know the magnificent creatures I have had the distinct pleasure of calling my daughters.
Love, Respect and profound health to all <3