Hope For Heidi
Donation protected
Heidi’s cancer is back! Fortunately, she has an awesome team guiding them through to get her the best care possible. Heidi, Christina and Dan will be staying in California for 6 weeks. They will go down right after Heidi's graduation beginning of June and stay while Heidi undergoes treatment. (see below for details). They will have living expenses while down there of course and could use some help with that. Medical expenses will be high again, as she goes through treatment so any money raised will help with that as well.
Timeline of what happened (copied from Christina's post on Facebook):
April 9th Heidi had what should have been her last biopsy at the U. We (her team and us) expected the results by the 13th to be nothing but clear. Dr. Stefanski called on the 14th late in the afternoon with the very unexpected results of leukemia cells in her marrow, Heidi had relapsed exactly 2 years after her transplant. Of course we were all completely devastated, plans we had to move on with life had changed. We met with her team at the U on Friday the 16th to learn about the next steps, one possibility was Car-T single antigen (CD19) therapy offered at the U. More information here: https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.mhealth.org%2Fblog%2F2017%2Fseptember-2017%2Funiversity-of-minnesota-health-one-of-30-centers-to-offer-groundbreaking-immunotherapy%3Ffbclid%3DIwAR1hoAc8x9jyy1rTWw3SBTOhOg5I3fFg6cAbTT0eZkd2ZMr0cZRMtJK6mEg&h=AT1OWOZvEy_ujGD2zKhzx4blEmWAnJUu0R9d3qSI5Sgu1HMx0MEekfqlNmNu1SF4sncehqtJp4FWMjUmUrfE8e3iBFy5sKo7K7faOVE1EX8PQ6khhA8UzfngXDwV_zlDcg&__tn__=-UK-R&c[0]=AT2kyAwZlS75MFZxCnWchfcph0EjAUwO9D7kLEQlZC5ZE1maKG1R1RYTh74N18WW5TxFO_OTBiBkO4mVBUCKpA0qVhHTEHgPYsv-ASMQ8VUxepbqnGJxQtk8OEoX_LLzoBRFgZE9U7NmSCZzSvIg4i9_sMO1iJ-euFwYWyzYV_xKsrkefG6cqVlcZefuBW5suvPgSn6U8BsJNi05eA
Dr. Stefanski said this was a good option, another option is a trial Car-t dual antigen therapy offered at Children’s hospital of Philadelphia, a hospital in Seattle and Lucille Packard Children’s hospital in Stanford. https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.stanfordchildrens.org%2Fen%2Fservice%2Fimmunotherapy%2Fcar-t-cell-therapy%3Ffbclid%3DIwAR1YyId0o6_QLmnzQBD4IV0V0vLyUU7G4n3LaexTCdCQbp2yzfB7_d7_76I&h=AT1s3sPTk2qEL18HuY0oUkH_2vYBoEQQSGqlsexaBSnTJCXViariEUPYHbOyLE2GKH1-95wwevda4E0g6L0NojhQrvjHZ1ZGYXta-o-ubStdf2ovAk-Nfo3z778mL9vyWw&__tn__=-UK-R&c[0]=AT2kyAwZlS75MFZxCnWchfcph0EjAUwO9D7kLEQlZC5ZE1maKG1R1RYTh74N18WW5TxFO_OTBiBkO4mVBUCKpA0qVhHTEHgPYsv-ASMQ8VUxepbqnGJxQtk8OEoX_LLzoBRFgZE9U7NmSCZzSvIg4i9_sMO1iJ-euFwYWyzYV_xKsrkefG6cqVlcZefuBW5suvPgSn6U8BsJNi05eA
We had to make a very quick decision as the trial option in Stanford had opens within 2 weeks of her re-diagnosis.
Video that explains the process:
https://l.facebook.com/l.php?u=https%3A%2F%2Fyoutu.be%2FuC16iDy2XoI%3Ffbclid%3DIwAR0xRKiQBQF862-HfvJ5gDzsli_CTR_kQRbrDpAGNtXaok-kJsYzzzlJ4gc&h=AT3egKDVJmJdagaCARBPu2XPCkM7BePhurh-rCU16AJGGLDfQDVIpCO3sz15kk-z028TeVcbEScxOUvTgJoJqsLkYA-QY8-QzKT_Q_0BYUwfObo2RkiDRnfbjU8vHQhosA&__tn__=-UK-R&c[0]=AT2kyAwZlS75MFZxCnWchfcph0EjAUwO9D7kLEQlZC5ZE1maKG1R1RYTh74N18WW5TxFO_OTBiBkO4mVBUCKpA0qVhHTEHgPYsv-ASMQ8VUxepbqnGJxQtk8OEoX_LLzoBRFgZE9U7NmSCZzSvIg4i9_sMO1iJ-euFwYWyzYV_xKsrkefG6cqVlcZefuBW5suvPgSn6U8BsJNi05eA
April 21st: we met virtually with Dr. Liora Schultz and her nurse Coordinator Courtney Erickson to discuss the opening with their trial. https://l.facebook.com/l.php?u=https%3A%2F%2Fstanfordhealthcare.org%2Ftrials%2Fc%2FNCT03233854.html%3Ffbclid%3DIwAR1YyId0o6_QLmnzQBD4IV0V0vLyUU7G4n3LaexTCdCQbp2yzfB7_d7_76I&h=AT1PgyXQh_Ujs1Syo9sJN6_vmlA0fENSuctZe59g-Chcqj-2k32I2JIyCMXUq7p_RewZjuoqKhH0xg07tdy76gvY6rn9haCpqquAtL5n1Zx0fQV-UBywj2bkQevaq4oC_w&__tn__=-UK-R&c[0]=AT2kyAwZlS75MFZxCnWchfcph0EjAUwO9D7kLEQlZC5ZE1maKG1R1RYTh74N18WW5TxFO_OTBiBkO4mVBUCKpA0qVhHTEHgPYsv-ASMQ8VUxepbqnGJxQtk8OEoX_LLzoBRFgZE9U7NmSCZzSvIg4i9_sMO1iJ-euFwYWyzYV_xKsrkefG6cqVlcZefuBW5suvPgSn6U8BsJNi05eA
The benefits of the dual antigen therapy is an added protein (CD19&CD22) to attack the cancer vs only CD19 offered at the U of M. With the dual therapy we hope to avoid another transplant and everyone on Heidi’s medical team agrees this will give her the best chance. So we as a family agreed to fly out to California and go through this trial. The team at Stanford had more questions from Dr. Stefanski and we needed to wait for the final ok before everything was a go, in the meantime we celebrate Heidi’s 18th birthday on the 22nd.
April 23rd: Very late in the day we got the go ahead from CA the trial for Heidi was a go ahead. An organization called Team Tucker paid for and made arrangements to fly out to CA and our hotel stay. Dana was amazing taking care of us and especially putting it together at the very last minute, such a relief knowing we didn’t have to worry about those plans or expenses this time.
April 26th: appointment day at Lucille Packard Children’s Hospital in Stanford. We met with Dr. Ramakrishna and nurse Tina with the Car-t team. They spent time and reviewed all aspects of the trial and each step that is anticipated, along with side affects and what they can do about each one as they come up. Heidi (being 18 now) signed each consent form herself. We learned our way around the clinic and parts of the hospital. Since there is a pandemic going on California is still more restricted then MN and only allows 1 caregiver to accommodate the patient. For the consent and information session both Dan and I were able to be there, the social worker made a plea for a visitor exemption. Heidi needed to see the team for the aphaeresis in the adult side of the hospital and they would only one caregiver. During that meeting the team requested Heidi drink more fluids with electrolytes to help with the procedure on Wednesday.
April 27th: early morning appointments for an EKG, Echo and weight/height. Very quick appointments, with again only one caregiver. So dad slept in, mom accompanied Heidi.
April 28th: Aphereis day! Arrived at the clinic by 7:30, Heidi had an awesome nurse named Wally who took on challenging patient with potentially difficult veins. He was great getting Heidi’s veins “warmed up” with heat packs, lots of blankets and pillows to make her comfortable thereby making the whole process easier on her body. She had a huge needle in one arm to collect her blood, send it to the machine which separated the T-Cells and returned the remainder of her blood components to her other arm and back into her body. She had to remain perfectly still during this 4.5 hour procedure, how any child could do it I don’t know! This kid has the patience of a saint. Nurse Wally serenaded us with a song he will be performing at his friends wedding this summer, beautiful set of lungs, everyone needs a singing nurse with great stories to make it through the long procedures like that.
April 29th: back to Minnesota! Now we wait for the team at Stanford to do their thing with the cells (genetically modify them) they expect the cells to be ready by May 12th or 13th and wanted us back out there for Infussion at that time but, it’s Heidi’s senior year in high school so we pushed back a little to give her these experiences. Thankfully the team is accommodating our requests and allowing us to do some treatment in MN as needed before heading back to CA June 6th for the work up and Infussion of the expanded t-cells.
Timeline of what happened (copied from Christina's post on Facebook):
April 9th Heidi had what should have been her last biopsy at the U. We (her team and us) expected the results by the 13th to be nothing but clear. Dr. Stefanski called on the 14th late in the afternoon with the very unexpected results of leukemia cells in her marrow, Heidi had relapsed exactly 2 years after her transplant. Of course we were all completely devastated, plans we had to move on with life had changed. We met with her team at the U on Friday the 16th to learn about the next steps, one possibility was Car-T single antigen (CD19) therapy offered at the U. More information here: https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.mhealth.org%2Fblog%2F2017%2Fseptember-2017%2Funiversity-of-minnesota-health-one-of-30-centers-to-offer-groundbreaking-immunotherapy%3Ffbclid%3DIwAR1hoAc8x9jyy1rTWw3SBTOhOg5I3fFg6cAbTT0eZkd2ZMr0cZRMtJK6mEg&h=AT1OWOZvEy_ujGD2zKhzx4blEmWAnJUu0R9d3qSI5Sgu1HMx0MEekfqlNmNu1SF4sncehqtJp4FWMjUmUrfE8e3iBFy5sKo7K7faOVE1EX8PQ6khhA8UzfngXDwV_zlDcg&__tn__=-UK-R&c[0]=AT2kyAwZlS75MFZxCnWchfcph0EjAUwO9D7kLEQlZC5ZE1maKG1R1RYTh74N18WW5TxFO_OTBiBkO4mVBUCKpA0qVhHTEHgPYsv-ASMQ8VUxepbqnGJxQtk8OEoX_LLzoBRFgZE9U7NmSCZzSvIg4i9_sMO1iJ-euFwYWyzYV_xKsrkefG6cqVlcZefuBW5suvPgSn6U8BsJNi05eA
Dr. Stefanski said this was a good option, another option is a trial Car-t dual antigen therapy offered at Children’s hospital of Philadelphia, a hospital in Seattle and Lucille Packard Children’s hospital in Stanford. https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.stanfordchildrens.org%2Fen%2Fservice%2Fimmunotherapy%2Fcar-t-cell-therapy%3Ffbclid%3DIwAR1YyId0o6_QLmnzQBD4IV0V0vLyUU7G4n3LaexTCdCQbp2yzfB7_d7_76I&h=AT1s3sPTk2qEL18HuY0oUkH_2vYBoEQQSGqlsexaBSnTJCXViariEUPYHbOyLE2GKH1-95wwevda4E0g6L0NojhQrvjHZ1ZGYXta-o-ubStdf2ovAk-Nfo3z778mL9vyWw&__tn__=-UK-R&c[0]=AT2kyAwZlS75MFZxCnWchfcph0EjAUwO9D7kLEQlZC5ZE1maKG1R1RYTh74N18WW5TxFO_OTBiBkO4mVBUCKpA0qVhHTEHgPYsv-ASMQ8VUxepbqnGJxQtk8OEoX_LLzoBRFgZE9U7NmSCZzSvIg4i9_sMO1iJ-euFwYWyzYV_xKsrkefG6cqVlcZefuBW5suvPgSn6U8BsJNi05eA
We had to make a very quick decision as the trial option in Stanford had opens within 2 weeks of her re-diagnosis.
Video that explains the process:
https://l.facebook.com/l.php?u=https%3A%2F%2Fyoutu.be%2FuC16iDy2XoI%3Ffbclid%3DIwAR0xRKiQBQF862-HfvJ5gDzsli_CTR_kQRbrDpAGNtXaok-kJsYzzzlJ4gc&h=AT3egKDVJmJdagaCARBPu2XPCkM7BePhurh-rCU16AJGGLDfQDVIpCO3sz15kk-z028TeVcbEScxOUvTgJoJqsLkYA-QY8-QzKT_Q_0BYUwfObo2RkiDRnfbjU8vHQhosA&__tn__=-UK-R&c[0]=AT2kyAwZlS75MFZxCnWchfcph0EjAUwO9D7kLEQlZC5ZE1maKG1R1RYTh74N18WW5TxFO_OTBiBkO4mVBUCKpA0qVhHTEHgPYsv-ASMQ8VUxepbqnGJxQtk8OEoX_LLzoBRFgZE9U7NmSCZzSvIg4i9_sMO1iJ-euFwYWyzYV_xKsrkefG6cqVlcZefuBW5suvPgSn6U8BsJNi05eA
April 21st: we met virtually with Dr. Liora Schultz and her nurse Coordinator Courtney Erickson to discuss the opening with their trial. https://l.facebook.com/l.php?u=https%3A%2F%2Fstanfordhealthcare.org%2Ftrials%2Fc%2FNCT03233854.html%3Ffbclid%3DIwAR1YyId0o6_QLmnzQBD4IV0V0vLyUU7G4n3LaexTCdCQbp2yzfB7_d7_76I&h=AT1PgyXQh_Ujs1Syo9sJN6_vmlA0fENSuctZe59g-Chcqj-2k32I2JIyCMXUq7p_RewZjuoqKhH0xg07tdy76gvY6rn9haCpqquAtL5n1Zx0fQV-UBywj2bkQevaq4oC_w&__tn__=-UK-R&c[0]=AT2kyAwZlS75MFZxCnWchfcph0EjAUwO9D7kLEQlZC5ZE1maKG1R1RYTh74N18WW5TxFO_OTBiBkO4mVBUCKpA0qVhHTEHgPYsv-ASMQ8VUxepbqnGJxQtk8OEoX_LLzoBRFgZE9U7NmSCZzSvIg4i9_sMO1iJ-euFwYWyzYV_xKsrkefG6cqVlcZefuBW5suvPgSn6U8BsJNi05eA
The benefits of the dual antigen therapy is an added protein (CD19&CD22) to attack the cancer vs only CD19 offered at the U of M. With the dual therapy we hope to avoid another transplant and everyone on Heidi’s medical team agrees this will give her the best chance. So we as a family agreed to fly out to California and go through this trial. The team at Stanford had more questions from Dr. Stefanski and we needed to wait for the final ok before everything was a go, in the meantime we celebrate Heidi’s 18th birthday on the 22nd.
April 23rd: Very late in the day we got the go ahead from CA the trial for Heidi was a go ahead. An organization called Team Tucker paid for and made arrangements to fly out to CA and our hotel stay. Dana was amazing taking care of us and especially putting it together at the very last minute, such a relief knowing we didn’t have to worry about those plans or expenses this time.
April 26th: appointment day at Lucille Packard Children’s Hospital in Stanford. We met with Dr. Ramakrishna and nurse Tina with the Car-t team. They spent time and reviewed all aspects of the trial and each step that is anticipated, along with side affects and what they can do about each one as they come up. Heidi (being 18 now) signed each consent form herself. We learned our way around the clinic and parts of the hospital. Since there is a pandemic going on California is still more restricted then MN and only allows 1 caregiver to accommodate the patient. For the consent and information session both Dan and I were able to be there, the social worker made a plea for a visitor exemption. Heidi needed to see the team for the aphaeresis in the adult side of the hospital and they would only one caregiver. During that meeting the team requested Heidi drink more fluids with electrolytes to help with the procedure on Wednesday.
April 27th: early morning appointments for an EKG, Echo and weight/height. Very quick appointments, with again only one caregiver. So dad slept in, mom accompanied Heidi.
April 28th: Aphereis day! Arrived at the clinic by 7:30, Heidi had an awesome nurse named Wally who took on challenging patient with potentially difficult veins. He was great getting Heidi’s veins “warmed up” with heat packs, lots of blankets and pillows to make her comfortable thereby making the whole process easier on her body. She had a huge needle in one arm to collect her blood, send it to the machine which separated the T-Cells and returned the remainder of her blood components to her other arm and back into her body. She had to remain perfectly still during this 4.5 hour procedure, how any child could do it I don’t know! This kid has the patience of a saint. Nurse Wally serenaded us with a song he will be performing at his friends wedding this summer, beautiful set of lungs, everyone needs a singing nurse with great stories to make it through the long procedures like that.
April 29th: back to Minnesota! Now we wait for the team at Stanford to do their thing with the cells (genetically modify them) they expect the cells to be ready by May 12th or 13th and wanted us back out there for Infussion at that time but, it’s Heidi’s senior year in high school so we pushed back a little to give her these experiences. Thankfully the team is accommodating our requests and allowing us to do some treatment in MN as needed before heading back to CA June 6th for the work up and Infussion of the expanded t-cells.
Organizer and beneficiary
Julie Fernandes
Organizer
Farmington, MN
Christina Kuckes
Beneficiary