On the first anniversary of Patrick’s death, January 9, 2013, we celebrated his life by dedicating a state of the art MIBG facility at Children’s Healthcare of Atlanta. Patrick travelled to Philadelphia and New York frequently for treatment not available in Atlanta, including four MIBG treatments at Children’s Hospital of Philadelphia. The first two were intended to be curative; the latter two merely palliative. All four were necessary as we fought for his life. As a reminder, MIBG is a radioactive tracer delivered intravenously that is absorbed by neuroblastoma cells. It is used at low doses to measure a neuroblastoma patient’s tumor burden. At high doses the radiation kills neuroblastoma cells while sparing nearby cells. As MIBG veterans, we recognized that MIBG treatment, either alone or in combination with other agents, was here to stay as part of neuroblastoma treatment. But there was no MIBG center located in the southeast during our battle. We at Press On changed that by funding the construction of the MIBG suite at CHOA, which uniquely includes two separate rooms – one for the patients and one for the family, as well as cutting edge technology designed to better entertain the kids and the parents during the four day isolation period. Importantly, the design also promised to reduce radiation exposure to the caregivers – both patents and clinicians.
So, a year and a half later, Erin and I recently had breakfast with Kelly Goldsmith, M.D., the Director of the MIBG service at CHOA, to get an update on how things are going. I will share with you my questions and her answers below. First, I want to recognize Erin’s efforts to greet every family who checks into the MIBG treatment room at CHOA with a gift basket of toiletries and toys. Her work ranges from simple, selfless, sweet tasks like those to pitching foundations for new grants. Keep up the good work, Erin! Now for the results of the Q & A with Dr. Goldsmith:
- How many kids have received MIBG treatment at CHOA? 18, and we only opened last July 2013.
- Where did they come from? North Carolina , South Carolina, Florida, Birmingham, St Louis, and Locally from Egleston and Scottish Rite patients. Importantly, by having MIBG therapy AND being a NANT/COG Phase I institution, we have seen over 30 consults for relapsed neuroblastoma and malignant paraganglioma this past year and along with having MIBG therapy, we have also been able to offer some of the patients Phase I trials through COG and NANT that they did not have access to locally.
- Had any of the kids received prior MIBG treatment elsewhere? Yes, two patients. Our very first patient we treated had received his first MIBG therapy elsewhere.Where? One got MIBG therapy at CHOP, and one received MIBG therapy at Vanderbilt (both of these kids were from our institution so it was nice to be able to keep them home for their subsequent MIBG treatments!)
- How did the experiences compare? Both families truly enjoyed their experience at CHOA and said it was much better than previous MIBG institutions. Reasons: CHOA has a separate large parent room (an actual patient room) adjacent to the patient’s/MIBG treatment room that is connected with a door as well as AV equipment that allows parents to talk to and play video games/watch videos with their child while being in the separate non-radioactive caregiver room. This dropped parent radiation exposure by 1/2 compared to the parent’s exposure who went to CHOP where there is no parent room and the parent/caregivers have to stay in the room with the MIBG patient (behind lead shields, etc). The other family told us that Vanderbilt has a separate “ante-room” but that it is the “size of a closet” and only big enough for a fold out chair to sleep in (and with nurses gowning in that room, they hardly slept).
- Has the configuration of the MIBG room had a measureable impact on radiation exposure to parents and clinicians? Yes, see answer above, It has decreased parent/staff exposure by > 50% compared to other facilities. The AV equipment not only allows parents to interact with the patient, but for nurses/MD’s and staff to interact with as well as monitor the patient by a closed circuit TV at the nurses station so that we can observe any changes in the patient without having to go in the room.
- Has the configuration of the room had an impact on the family’s quality of life? How so? We have a unique set up where BOTH parents can stay at the hospital given we have a large enough room and two pull out sofe beds. At CHOP and other places, only one caregiver can be in the room with the patient at any given time. Thus the other parent, if they come from out of town, must stay far away at the Ronald McDonald house or in a nearby hotel. By having both parents in the adjacent caregiver room, they can more easily trade off responsibilities of caring for the patient (which is a BIG role for parents of kids getting MIBG therapy) and not have to be alone. Even parents who co-habitate wtih their child at home and who were nervous about their toddler being alone inthe adjacent room (as parents are not allowed in the bed with the patient after MIBG injection) have told us that being able to console their child withouth going into the room using the AV system (either by talking to them through the speaker system, or seeing them on the TV) has made it easier for the child to remain in the bed. In the other institutions, when a child SEES their parent right next to them, they more often want direct comforting measures by the parent in the room, which then the parent is not allowed to do as they need to stay behind lead shields. Now, our parents are definitely allowed in the patients room just like the other MIBG institutions, but they remark that they love having the option to not be in there the entire time.
- Are there possible clinical trials on the horizon combining MIBG with other agents that either radiosensitize tumor or increase MIBG uptake? Please explain.Yes. There is an upcoming NANT trial (NANT 11-01) that will evaluate the difference in response to three types of MIBG therapies. MIBG alone vs. MIBG with Irinotecan/VCR vs. MIBG with Vorinostat. The additional agents are known to increase MIBG uptake preclinically into neuroblastoma cells. These trials have all been run as separate PHase I studies in NANT, but now we will compare response and pick the best therapy to move forward into PHase III trials for newly diagnosed patients. We will be participating in this trial that we hope will open in the country within the next year. Additionally there is a phase III pilot that is open in the COG (ANBL09P1) that is evaluating the feasibility of giving MIBG therapy to newly diagnosed patients with high risk neuroblastoma. It is given after 5 cycles of induction chemo and before autologous stem cell transplant. We are a participating institution for this trial and also will become one of the COG MIBG treatment sites in the next month.
- Does the ability to conduct MIBG treatment at CHOA allow CHOA to participate in these trials? Yes very much (please see my #7 response for more detail) Why is that important? This is very important in that there are only a handful of MIBG treatment sites throughout the country and we are one of the few to be so successfully busy. We are one of the few sites in the Southeast to have MIBG therapy (and the only site in the deep south) that allows us to offer these innovative therapies to patients in this region so that we can improve cure rates for patients in the Southeast and elsewhere with high risk and relapse neuroblastoma while minimizing long distance travel to do so!
We at Press On are excited by these answers! We look forward to seeing new MIBG based trials open in Atlanta for the benefit of our southern kids fighting neuroblastoma, including front line therapy! Thanks to all of you for making this progress real.