Des Moines Nesties
Dear Community,
Our tech team has launched updates to The Nest today. As a result of these updates, members of the Nest Community will need to change their password in order to continue participating in the community. In addition, The Nest community member's avatars will be replaced with generic default avatars. If you wish to revert to your original avatar, you will need to re-upload it via The Nest.
If you have questions about this, please email help@theknot.com.
Thank you.
Note: This only affects The Nest's community members and will not affect members on The Bump or The Knot.
Our tech team has launched updates to The Nest today. As a result of these updates, members of the Nest Community will need to change their password in order to continue participating in the community. In addition, The Nest community member's avatars will be replaced with generic default avatars. If you wish to revert to your original avatar, you will need to re-upload it via The Nest.
If you have questions about this, please email help@theknot.com.
Thank you.
Note: This only affects The Nest's community members and will not affect members on The Bump or The Knot.
Hawk Fans: Help Lucy - Raffle to win 2 Iowa Press Box Club Tickets & Parking Pass
To support the Lucy Jane Roth Medical Fund (our friends 2.5 year old daughter with brain cancer) we are holding a raffle for 2 Iowa vs Northwestern Press Box Club Tickets and Parking Pass for the October 15th Game. Raffle tickets are $20 and are on sale now. The drawing will be on October 12th. You can purchase tickets from me or by emailing HelpLucyRoth@hotmail.com
Re: Hawk Fans: Help Lucy - Raffle to win 2 Iowa Press Box Club Tickets & Parking Pass
Thanks for asking, her mom posted this update today....grab the kleenex...
Also on Monday, a radioactive material shipped from Europe was injected for a sedated CT scan that Lucy had on Tuesday. Her oncologist deliberated and ordered this scan on the off chance that Lucy?s tumor would be receptive to a particular hormone, somatostatin. This proved to be a fortuitous decision because the scan showed that the tumor was overwhelmingly positive as having receptors for this hormone. This means that we can use somatostatin to inhibit growth of the tumor.
Over the past couple of weeks, Lucy?s team here in Iowa City has been working on a plan for treatment of her tumor. At the same time, her team at Children?s Memorial in Chicago was conducting an independent review of her case, with a pathologist who specializes in pediatric meningiomas studying samples of the tumor. Separately, both teams proposed the same protocol of treatment. They will continue to work together to monitor Lucy?s case and further study her tumor. The doctors in Chicago are part of the Children?s Oncology Group as well as the Pediatric Brain Consortium, and they will be conferring with other doctors across the country about Lucy. Her oncologist feels confident that the two teams have made the correct diagnosis and formulated the right plan for treatment.
The doctors have proposed a three-pronged approach to treating Lucy?s cancer:
1. The hormone somatostatin will be used to inhibit further growth of the tumor. Damien and I (Heather) will need to give Lucy twice-daily injections of this hormone. Yesterday after meeting with our oncologist, a nurse instructed us both on giving the injections ~ we even practiced on each other! While it won?t be too painful, the hardest part will be having to restrain a very upset Lucy as we give her the shots. It?s pretty much impossible to explain the need for this to a toddler! Hopefully in time it will somehow get easier.
2. An antibody, Avastin (bevacizumab), will be used to stop new blood vessels from growing which feed the tumor. This drug will be infused into her port every two weeks at the doctor?s office.
3. A chemotherapy drug, irinotecan, will be used to kill the tumor and cancer cells. This drug also will be infused into her port every two weeks.
Lucy?s oncologist does not expect there to be many side effects from the three drugs, which will be given for about a year. Possible effects could include stomach cramping, diarrhea, and hair thinning. We are hoping the effects will be very minimal. We are also praying that this combination of drugs will be successful in managing Lucy?s tumor so that we will not need to resort to heavy-duty chemo drugs that would have greater side effects.
Meanwhile, Lucy has begun daily physical and occupational therapy sessions at the Center for Disabilities and Development at the University. These sessions are both fun and very difficult for Lucy. The inability to move her right side (caused by stroke during her surgery) scares and frustrates her, so when the therapists work with those limbs it can be very upsetting for her. The therapists are wonderful and incorporate play and toys into everything they do. In time we think it will become easier for Lucy, but this early stage of therapy is the most difficult.
Damien and I are doing as well as we can given the daily challenges we all face. The hardest thing is that nothing is easy anymore ~ seemingly simple appointments quickly become long and difficult; small procedures still make our little girl suffer and at times it?s unbearable for us to watch, but we must remain strong for her and Jake; the good days we have are constantly clouded by future scary unknowns that we must push to the backs of our minds. It can be emotionally, mentally, and physically exhausting. We have realized there is a good reason that ?one day at a time? is such a popular clich? ~ it?s the only way we can function right now.
Lucy and Jake keep us going, and every day they inspire us. It is so wonderful for all of us to be at home together again. Lucy has been recovering so well from her surgery, and each day we see movements on her right side that are very promising. She is so sweet and so funny ~ she has the same great sense of humor as before and she loves to make us laugh! Seven-year-old Jake is the most extraordinary brother. He is so loving toward his little sister. He sees past her scars and shaved hair, and always asks me how she could possibly be so cute, saying that she is the cutest little girl he has ever seen. He worries about her and is very protective. The other day he told me that he wanted to see a shooting star, so that he could wish Lucy would get better. They were so close before Lucy?s surgery, and it seems they have only gotten closer since. Both of our children are remarkable human beings, and we are so blessed to be their parents.
As we face the biggest challenge of our lives, we remain grateful. We understand how lucky we are in so many ways and are aware of the many blessings in our lives. We again want to thank everyone for your support and for keeping Lucy in your thoughts and prayers.
We aren't Hawk fans -- and aren't available that day -- but I'm sending the info on to some friends I hope might be interested!
Many continued prayers & positive thoughts for Lucy & her family...
Thanks!!!!!!