Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Monday, March 5, 2012

We are in Grand Rapids, Michigan

Long overdue journal entry...here it comes...I know when I start receiving emails, text messages and facebook messages asking how Emily is doing that it has been a while since I updated, and I apologize.

Since we got home from Philly, Emily has done well, The port finally started to feel better and where they took the broviac out wasn't feeling as sore. When we got home we started working Helen DeVos to get an appointment set up. We didn't want Emily not being on treatment for too long so we wanted things to move quickly. Thankfully, Dr. Sholler was able to get us in March 7th for CT scan fused with MIBG on March 8th. They also wanted to do a bone marrow biopsy but because Emily had already had one at CHOP on the 23rd and no treatment after that, they were able to use those results, which were negative. Thursday Emily will have her MIBG scan and then afterwards we will meet with Dr Sholler to talk about the scan and talk about the trials that they have to offer.

Thursday Emily had a clinic visit at home and we were able to talk with Dr. Gowda for a little while. This was also Emily's first time having her port accessed. They used Emla cream and overall she did fine with the port being accessed, I think it was just the fear and anxiety of it all. I have to be honest it is so weird not having to flush her lines daily which I have done for the last 14 months and doing weekly dressing changes, which I have also done for the last 14 months. Dr.Gowda also didn't understand why CHOP didn't have any other trials that Emily would qualify for and didn't understand why Emily didn't qualify for the HU 14.18 Antibodies. Antibodies/Immunotherapy is supposed give children an additional 30% EFS (Event Free Survival Rate) and this is what we want for Emily. Dr. Gowda looked over the trial and couldn't see why she didn't qualify for it, so he was going to check with CHOP and see what he could find out. He did print out stats on the temolozide and irenotecan chemo that they wanted to put Emily on and really the numbers were not all that great, however if it works, then it works. Dr. Gowda indicated to us that he worried about putting Emily on any type of Phase 1 trials right now when she has a great quality of life and no problems with anything except for a tad bit high on her thyroid levels and we agreed with him. He also indicated to us that after we visited with Dr. Sholler that we really needed to make a decision on what to put Emily on because he didn't want her off treatment too long and she progress. This too we agreed with. So, although we are making the trip to MI, it doesn't mean that we will go with any of the treatment that they have, but we wanted to have options if they are better for Emily than just the chemo.

We were able to schedule a flight through Wings of Mercy and everyone through the organization were/is amazing. We wanted to leave Tuesday, March 6th before we needed to be here, but the closest that she had was Sunday March 4th, so we worked with what they had. So, we had to make sure Brianna could stay with my parents and Jessie went to her dads a day early. We were told that Helen DeVos does not allow siblings into their clinic because of risk of infections, which we think this is great most clinics should do this.

Emily on the plane
Thanks Mom and Brian for taking Brianna and taking the van from the airport. Wings of Mercy is an amazing organization and the pilots were great. Very friendly. This was Emily and mine first time on a small plane, and we both did fine, no problems. I was a little worried about my anxiety with the flight, however overall it wasn't bad, there was moments and mostly I was trying not to be too nervous and let Emily see that. It took about 3 hours to get to MI, however if we were to drive it is about 775 so approx 13 hours away. We got into the FBO airport and someone took us over to the main terminal to pick up our rental car and then head to the Ronald McDonald House. This would be our first time staying at a Ronald McDonald House and they were able to confirm that we should have a room with no problem (nothing like Philly) but we also had a room at the Renucci House if there wasn't anything at the RMH.
The plane that we flew on to head to MI

Emily enjoying time with Sue and JoJo in the pool!

Emily's bestest friend Sue and JoJo made the trip (6 hour trip) to come visit Emily and Doug and I and they got a hotel and made sure the hotel had a pool. Emily was so excited to be able to come to Michigan and meet up with Sue, she has missed her and then get to get in the pool. Thank you Sue and JoJo, Emily absolutely enjoyed the day and being in the water.

We did get a call today from Helen DeVos that they had scheduled Emily for an EKG on Wednesday as well, because if we decided to go with one of their trials that some of the trials would require an EKG, so we were ok with that. We are anxious to hear what they have a available here, and everyone from facebook when we noted about being in MI has been so friendly and kind. Thank you all so much for your kindness and welcoming us to MI. I think at this point we are not nervous about anything, we are just anxious to get things into the next mode and know what we are doing.

Overall, Emily is doing great. Her hair is coming in quickly and she is so excited about that. She said she can't wait until I can put pigtails in her hair. She is enjoying going to school once a week for 3 hours (next week they will offer it twice a week) and she is so happy to be around other kids. Emily is so excited to learn and be around other kids. She is starting to gain weight and she is almost at her weight of 30 pounds where she was when she begin this whole journey 14 months ago, so it is so nice to start to see meat on her bone and not see just the bones. She is thriving and we are really happy about that, and so ready to be past this journey.

Thank you to everyone who has been so helpful and continues to be. The meals that have been coming from Fairy Godmother Project, have been amazing and ever so helpful. The very friendly people and the fundraisers that have been started in my mom's area and even by some local friends are so wonderful. We are very thankful to everyone who has been so kind. The gift cards continue to be of so much help and we are so thankful to all of the wonderful people who are just so wonderful to our family and send some and continue to do so. We can not tell you how much help they are! My cousin Mandy sent me a message and said someone wanted to send Emily a special present that she will pick up when we get home and we can't wait to see the special present for her. We will be sure to take a picture and share. Thank you Tricia and Lynn for making the Team Emily bags and when we get home we can start making some bags and we will be able to take them up to the hospital. We are still collecting coupons to make bags for families and will continue to do so until we can get a huge stash of items, but we are so excited to be giving back to newly diagnosed families. Thank you Sue and JoJo for always sending huge amounts of coupons and for bringing a huge stash of things for the bags. Giving back is excited and makes us feel good for all the amazing things that people do for us. I am sorry if you have emailed or sent messages and I have responded, life has been busy, but I will try to get back to you all soon. Thank you again for all you have done and continue to do, it means so much and we constantly appreciate all that you do.

Well, I am going to call it a night. We are getting up early to meet with Sue and JoJo for breakfast before they head back home. Remember to love and kiss your kids every night and tell them how much you love them. Love you Jessie and Brianna! Good Night.


  1. Thanks for the update!


  2. I am praying for your princess...and Helen Devos is amazing. If you need anything while you are here...feel free to let Ashley know and I would run it to you in a heart beat!!!!

    Hugzzz Laura Crandle

  3. I am glad to see some positive sounding news! Always praying