It has been a very weird but awesome feeling being home and - TopicsExpress

It has been a very weird but awesome feeling being home and together again after our family spent a whole summer separated by 3 different states. Julia, Matthew and Bella started school yesterday. Matthew started kindergarten and Sarah is about to start preschool. Its bittersweet for me because it just means theyre growing up so fast. This is the first time in 10 months that weve finally had some normalcy in our life. I was and still am nervous about sending Jules back to school. Ive spent just about every single day with her for the last year, either in the hospital, in NY or at home. Now shes on her own. She is so happy to be back at school and all the teachers and students are so excited to have her back. We decided to start her in first grade again because she missed almost the whole year last year. She has an awesome teacher who is so nurturing and Im sure she will keep a good eye on Julia. So the doctors finally got back to me about Isaac. They said the spot on the MIBG is so small and faint that theyre not worried about it being disease. They cant say what it is for sure (it could be scar tissue or a number of other things...) but they are not suspicious of it being NB relapse. We discussed a bone biopsy but they dont recommend it for a couple of reasons. The spot is so small they might not be able to get a good sample of it. Its also a painful procedure. So I guess well just have to trust the doctors and have a lot of faith in God that He will take care of things. I feel like I can finally breathe a little. Julias latest blood tested positive for HAMA (human anti mouse antibody). Her body has produced an antibody that has recognized the 3f8 antibody as something foreign and is attacking it. So this means that we are not flying back next week for her next treatment. Her blood needs to be tested again in 2 weeks to check for HAMA. If shes still positive then they will want to give her a low dose chemo to get rid of the antibody that shes producing. This gives us quite a break in treatment... not sure if I should be nervous about this. I think its Gods way of giving our family a well needed break from treatment and give us some time together to adjust to our routine. Im finding it very hard to go back to our normal life again. How do you endure 10 months of hell and then expect to just bounce back as if nothing had happened. Our lives got turned upside down and now I dont know how to start being a normal mom again and do normal things. Not a day goes by that I dont think about the parents and families who have lost their children to this horrible disease. I almost feel a sense of guilt that Julia has done so well and is finally able to go back to school and do almost everything a child should do. For some kids who are fighting, they never get that chance. This is why I am asking all of you to use any resource you have and be an advocate for these children. Spread the word about childhood cancer on social media. Post some facts about how little funding they get for cures. September is childhood cancer awareness month and this is what I am asking of all of you. The more awareness, the more funding! On September 2nd, Times Square in NY is going to be lit up gold in honor of childhood cancer awareness. This is a huge deal and Im so excited for this. The Empire State Building, however, has refused to light up their building and go gold. They have refused several requests from cancer families and there is now a petition on Facebook for them to join other famous buildings all over the world to support childhood cancer awareness month. Please like the page and share it... its called Empire State Building Go Gold. Thank you so much for all your support. You have all been such an amazing blessing in our lives and please forgive me for not updating you sooner on Isaacs results. I just talked to the doctor yesterday and I was supposed to update you last night but I was exhausted. Please continue to pray for all the kids who are still fighting this nasty disease. And pray that Julia will be able to resume her treatment soon. To Jesus through Mary, Julias mommy