Monday, April 21, 2014

Over the Hills and Through the Fields to a Third Option We Go...

We traveled across the state of California to UC Irvine hoping for a third option. So far the options Children's are,

1. Weekly chemotherapy with two drugs using a box that is surgically implanted under the skin so you have direct access to a vein. This treatment would continue for a year. About half of the children who undergo chemo for this type of tumor receive a second or third round because once you stop treatment the tumor begins to grow again. In order to get the tumor to stop growing you have to stop healthy cell growth as well. We are worried about what that would do to a three year old. There are also permanent damages to consider to her kidneys and liver.

2. Surgically remove the largest tumor that is wrapped around her eye. She would lose her eye and the surgery is risky (as in, she easily could die on the table from hitting an important artery).

So here is the update from today. We met with Dr. Tao of the Herbert a Eye Institute through UC Irvine. He is a doctor of Ophthalmic Plastic & Reconstructive Surgery and Oculofacial Cosmetic Surgery. He has experience removing these tumors and feels like he might be able to give us a third option, debulk the tumor without going too deep so she can keep the eye for now. This will reduce pressure which is causing her daily headaches and dizzy spells. Odds are she will need a second surgery where she
loses the eye in a year or two but it is short term fix for now. Other good reason for this option is we can test the tumor tissue to insure that it is not cancerous. Although it is rare for an NF1 tumor to be cancerous it will give us peace of mind to rule that out. 

Bad news is Emma is blind in one eye now. She can still sense light from dark but that's about it. Now we fight to keep her other eye and reduce the deformity that is increasing. I'll mourn that later but for now I am trying to focus on preventing total blindness. 

Next steps: we are taking Dr. Tao's recommendations back to Children's for a care council. Emma will have another MRI at the end of May, we will take that MRI back down to UC Irvine and if the tumor grows again we will move into surgery. If it is stable then we will give her a little more time. 

Moving forward we will need everyone's help and prayers. Any help with the next couple appointments would be wonderful. Also, our friend Arielle set up an auction to help us raise funds to help pay for Emma's medical bills which are quickly mounting. If you have anything that you can donate to the auction please comment on the blog and I will connect you with Arielle. We are also moving into a less expensive home to free up finds around the same time as all these appointments. We need help packing and moving. So, many ways to get involved! We thank you all for the help you have already given, the prayers and the kind words. Our friends and family have made this nightmare bearable. 

Monday, April 14, 2014

Looking for a Third Option

After Emma's last appointment we put up the "bat signal" for someone, anyone to help us. It's amazing how God works in wondrous ways. About ten years ago I had a friend in college with the
same major. We bonded through our classes and after graduating we kept in touch via Facebook. She read my blog on Emma and told me she works at UC Irvine now for a team that specializes in neuro ophthamology and orbital convenient!

She arranged a consult for Emma on Monday when we will be in LA visiting family and after a few short phone calls the MRI results are faxed over and we are all set to see if someone else can give us a third option.

Here is my thinking, maybe, just maybe we can do a less invasive surgery to remove just part of the tumor so her eye can sit properly and the pressure is relieved. It might not be possible but that is what we are going to find out. If given the option
I would rather do a couple smaller surgeries as needed then chemotherapy or a big surgery where she loses an eye. If Emma follows the NF1 pattern her tumor will continue to grow at random times and increments until the age of six. For some reason at six years old these tumors tend to shrink on their own. I've never wished for time to pass quickly but this will be the longest three years of my life!

Marching forward we are hoping and praying for some answers or at least more options. Please keep us in your prayers as we travel down to LA and meet with this new doctor.

Saturday, April 12, 2014

False Hope and a Grim Choice

Yesterday, honestly, it was a bad visit. The Neurologist told us last month that the tumor had no significant growth but it did grow. We spent a month in a sense of false hope. Emma's tumor grew 1mm on one side and 2mm on the other side. Although to his credit that is not "significant growth" it was growth in a short timespan of three months.

Here is one huge problem, Emma has a very rare condition. She has a NF1 optic nerve, stage one glioma that is causing prosthesis, meaning is is causing her eye to come out of the socket. Her tumor is wrapped around her optic nerve in a spiral like manner making it inoperable with out losing the eye. Her condition is rare, her type of tumor is rare, the fact that it is causing prothesis is rare and that it spirals around the nerve is rare. She is such a unique case that no one knows what to do with her.

Emma's doctors are revisiting the idea of chemotherapy but we have huge concerns about that treatment. I have mentioned our concerns before but here are some of the main reasons. In other cases it does not shrink the tumor and as soon as treatment stops the tumor grows again. Half of these cases must undergo a second round of chemotherapy. The bottom line is it is not proven effective. There is no cure, there is no treatment. Medicine is not comfortable with that fact so they want to push us into a treatment just to try something, anything. But this mother needs a better reason to pull the trigger other then, "it's the standard model of care". Sorry docs but I'm a pain in the ass. I will be requiring second and third options from other doctors outside your practice. I will be reading studies, researching what other countries do and (gasp) alternative medicine. If in the end chemo is the best option then of course I will jump on board. Never let it be said that this mother blindly follows doctors orders with out doing her research. Luckily our Genetics doctor is a mother herself and understands my stance. She is backing my choice to research more.

We decided to have a conference with all of Emma's doctors at the same time so we can ask all of the questions. Present there will be a Neurosurgeon, Oncologist, General pediatric doctor and Genetics Specialist. While we wait for that appointment to be set up I'm going to get another opinion from a new doctor and contact the Children's Tumor Foundation to see if they have any cases similar to Emma and what they did in that case.

As it stands right now Emma's outcomes are grim unless I can find something. We are not, thank God, worried about mortality but this is still a very difficult "stuck between a rock and a hard place" situation. I wish Emma was old enough to decide for herself. I wish I wasn't already so tired and emotionally spent but most of all I wish for a better option. If anyone reads this and can help us please contact me.

That's all for now, forgive me if I take a few days to respond to messages

Monday, April 7, 2014

Returning with Hope

It's been a couple weeks of celebrating birthdays in the family but this week it is back to the hospital we go. This Friday Emma has an appointment with the Genetics specialist we met with in January for
a follow up. She will be able to give us more details on Emma's last MRI then the Neurologist at our last appointment.

Don't get me wrong, I love Children's Hospital but last time they made me pretty frustrated. We were kept waiting for over two hours in a waiting room before her MRI then after she woke up we headed straight over to our appointment with the Neurologist who knew we were just waking up from anesthesia and already had a long day. He kept us waiting for 30 minutes in the main waiting room and 2 hours in a small exam room. Then he came in and lectured us on not blindly starting chemotherapy and said simply Emma's tumor had no significant growth.

But that is not simple. No significant growth could have a huge meaning. We know up till now her tumor has been growing at "an alarming rate" since that is what every doctor has said to this point. No growth at a time when the rest of her body grew rapidly from a size 2T to a 4T might mean our essential oil routine is working. It also might mean nothing. But details he did not give, instead he rushed us out and said to get another MRI in 3 months.

On Friday we are hoping for more information and a little more conversation about Emma. We ask that you please pray for some good news. We are also trying to negotiate our very large hospital bill that is still growing. It's quite overwhelming being this deep in debt and we ask that you please pray that we can get through it all.

A huge thank you to our very generous family at St. Peter's Lutheran, our dear friends who have blessed Gracie with play dates during appointments, helped with groceries, and one lovely friend who came to mow our lawn! With out your help we would be lost! I will update after our appointment on Friday.