Julia's Journey Against Neuroblastoma
Julia is a smart, funny, and energetic 6 year old who loves soccer, school, and her family. She is a wonderful sister to her 4 siblings and always thinks of others before herself. One day, Julia started complaining about her neck and not being able to move it. After complaining on and off for a couple weeks, we took Julia to get a CAT scan for her "stiff neck". On November 1, 2013, we found out that Julia had Stage 4 Neuroblastoma, which is the same disease her brother, Isaac had 9 years ago! It was the most devastating news we had ever heard and it was much worse hearing it for the second time.
Neuroblastoma is a rare and aggressive pediatric cancer. There is no known cure for it and more than half of kids who go through tons of grueling treatments to cure it (including high dose chemo, stem cell transplant, surgery, radiation, and immunotherapy) end up relapsing. Julia's brother, Isaac is our miracle and we have hope that God will provide us with another one. Every donation is directly helping us make sure that we can get our precious daughter Julia the best treatment there is so she can beat this horrible disease just like her brother did. Any donation is greatly appreciated.
When God has heard our many prayers and restores Julia back to health, at the end of this journey ALL remaining donations will go directly to childhood cancer research.
We encourage you all to visit www.juliasjourney.org to keep up with Julia's progress. I also have a link on my blog with facts about childhood cancer under "Just the Facts" if you would like to learn more. Julia also has a Facebook page, Julia's Journey! (There is more than 1 Julia's Journey; you can see her on the profile picture).
May God bless and keep you all.
Thank you for all your support, prayers, and donations.
Yours in Christ,
David and Anita
It seems like the only time I have to post an update these days is when we're stuck in the clinic for hours. We had double duty today at the clinic"¦ Isaac had his yearly checkup so he had an echocardiogram to check his heart function (chemo drugs that he had years ago can cause his heart to get weak) and a checkup with the oncologist. Julia also had an appt. and her hemoglobin was low so Isaac got to go to work with daddy while I get stuck in the clinic all day with Jules.
Sorry I've been lagging on updates! I have been wanting to write for so long but I've been super tired, stressed, very emotional, and completely overwhelmed lately. So the very few times that I actually had the chance to write I actually have so much to say I don't know where to start"¦ so I don't start at all:-/
Last week was probably one of the most stressful weeks I've had in a long time. My kids were off of school"¦ Easter was approaching"¦ Julia had just finished chemo and we just had so much to be on top of with her. To top it all off, David was barely around to help out because he had a convention for work that week. Taking care of Julia just takes a toll on me sometimes. She has been very needy lately. She's lost so much weight and she's physically very weak and tired. And she still has some stomach issues. The g-tube is definitely an adjustment"¦ all last week we were working on how much food she can tolerate through the g-tube. She is barely eating anything by mouth. I seriously can't look at her like this anymore. I just want to inject some butter in her to fatten her up! Grass-fed butter of course;-) She's 6 going on 7 in August and she weighs in at 33 lbs right now?!
So between making sure she's pooping every day, getting her to walk around and not just lay on the couch all day, trying to get her to eat (by mouth and through the g-tube!), her stomach pain, and her vomiting every day the last 4 days has really been taxing on me.
So what didn't help at all during this time is having my kids home and complaining nonstop about how bored they are and how this is their break from school and they want to have fun. Seriously?! Not to mention"¦ after 4 months of having my sister here to help me"¦ she left on Saturday to surprise my family for Easter:-( Yes I'm very sad and I can't wait for her to come back. My goal is to get her to move to Cali! But I'm happy for her to see her friends and go back to her life"¦ she did have one before giving everything up for me. Nothing I can say will show how much love and gratitude I have for my sister. She is an amazing person for doing what she did. I love you more than you know Ash! Anyone who knows me knows that I'm not good at showing affection and don't express my emotions very well. I pretty much keep them all bottled up and try to be strong for everyone. Sometimes it becomes too much for me constantly trying to keep it in. I finally had a breakdown with David last week because I just couldn't take it anymore. Being in a situation like this can really take a toll on a marriage. Your needs are not being met and you feel like you're drifting apart because you have no time for each other. Luckily David and I have a strong foundation and even though we have our little struggles here and there, they're just little bumps in the road of our long journey. Communication is the key"¦ and I will admit that sometimes I'm not the greatest with that. Ok I'll stop boring you with all my problems"¦back to Julia!
We are supposed to go back to NY in a week or two for an MRI of her spine and decide if they're going to surgery to remove her spinal disease (if it's still there). I'm honestly dreading going back there. It's so hard leaving the kids every time. And then going there and doing something as invasive as surgery is hard to do alone. It was very hard without David last time. And I'm not sure if David can come with me this time either. It's really hard for both of us to leave our 4 kids! they totally take advantage of anyone taking care of them. I'm still waiting on a potential date for surgery from the doctor. It's really annoying and very hard having to book flights so last minute and try to figure out who's gonna help with the other kids on such short notice.
I have to say that lately I feel like I'm getting weaker as I carry my cross that God has given me. I thank you all for your support and prayers because you are giving me the strength to go on when I feel like I can't do it anymore. I find strength in your encouraging and uplifting words. I might read them on the blog, Facebook or even in person if I run into you somewhere. Thank you again for giving me hope and increased faith to keep going and the strength to carry the huge cross that sometimes becomes unbearable.
You are all amazing!
Please pray that the doctors make the right decisions for Julia's next phase of treatment, whether it be surgery or something else. Pray for all kids dealing with cancer especially Parker (for clear scans), Kylie, Vincent, Caroline, Micah and unfortunately many others.
Yours in Christ,
Julia and I have been in the clinic for 12 hours waiting for our own room! I guess the hospital has been so busy lately that every room in the oncology unit was occupied. Lots of sick kids:-(
For some reason the more chemo Julia gets the more anxious I get about what it's going to do to her. The chemo drugs she's getting now are the same ones as the 4th round. And that's when she developed a really bad stomach infection that left her in the hospital for 2 weeks with excruciating pain. So needless to say I'm very anxious about this cycle of chemo. I wanted to cry when they started it. It's so hard watching your child be given something that you know is going to do major harm to their body but at the same time there's nothing you can do about it. My main goal now is to really focus on giving her all the right nutrients in her g-tube to help her body to be strong enough to fight all the bad stuff!
I've been very worried about Julia all day. She still has stomach issues and that's not good considering they already started chemo. So her stomach pain in combination with chemo can be detrimental. She's getting 3 different chemo drugs"¦ one of them causes jaw and bone pain. The last time she had this drug she complained a lot and couldn't eat for a couple weeks because of jaw pain. Another chemo drug she's getting can cause heart damage.
I'm very glad Julia has a G-tube because now we can just give her all of her supplements and meds without her having to take them by mouth. I also started putting some homemade green juices through her G-tube as well. I've been giving Julia several kinds of immune boosting supplements thanks to the recommendation of our naturopathic doctor. Julia has lost so much weight she's all skin and bones. It breaks my heart to see her look so thin, weak, and frail. Sometimes she walks like an old lady with her back hunched over. Not that long ago she was a "plump" little girl who was full of energy and a love for life. I want that girl back"¦ I want my daughter back so badly. My main focus right now is for Julia to gain some weight and in turn, gain some strength back. I really need to take advantage of her G- tube and get all kinds of good nutrients in her.
I want to thank everyone who has hosted a fundraiser in Julia's name. We are so thankful for your time and efforts. Many of these fundraisers are done without our knowledge. And I really don't mind as long as it's done in good taste. This last week I learned about a fundraiser in Julia's name already being advertised and it was at a local hookah bar. I would have never agreed to a fundraiser at a hookah bar. I just don't think it sends the right message. If anyone wants to host a fundraiser in my daughters name, please tell me about it beforehand. I'm sure you would want the same respect given if it was your child's name and picture being used to promote an event.
We are extremely grateful for all of the community support. It's amazing how people come together in a time of need. Julia continues to enjoy reading your beautiful handmade cards and appreciates every gift.
Most importantly thank you for your continued prayers. They are working so far and are greatly needed. Julia's battle is far from over. Pray especially for Julia to be strong enough to handle this round of chemo with no harsh side effects. Pray for us as her parents and for her doctors to make the right choice for treatment that will hopefully one day heal her and bring her back to health.
Yours in Christ,
"I can do all things through Christ who strengthens me"
I just spoke to her oncologist and he recommends we go home to do a 6th round of chemo and come back in about a month to scan her and see what our options are depending on the results of the scans. We will most likely start her either on a study here in NY or back home depending on what the best option is for her.
Thank you for your beautiful and uplifting messages. You are all amazing prayer warriors for Julia and we are so blessed for each and every one of you!
Yours in Christ,
" You cannot serve God and mammon. Therefore I say to you, do not worry about your life, what you will eat or drink; nor about your body and what you will put on. Is not life more than food and the body more than clothing? Look at the birds of the air, for the neither sow nor reap nor gather into barns; yet your heavenly Father feeds them. Are you not of more value than they? "
Please visit www.juliasjourney.org to view a video of Julia showing off her motor skills two days after surgery!
Julia's mostly been sleeping since the surgery which is a good thing because she needs a lot of rest. She can't eat or drink anything until tomorrow. Every time she wakes up she cries for water"¦ poor baby:-(
Hopefully she can get some food early tomorrow. She has an NG tube that will also come out tomorrow. We decided to have the surgeon put a G-tube in her stomach so that we can give her any medicine/supplements/nutrition without having to force it down her throat. I believe that nutrition is healing and since Julia is only 6 yrs old, we can't force her to eat the right foods that are good for her. That is why we made the decision to get the
g-tube. Let's hope it will make a difference in how well she tolerates treatments and how her body will recover from them.
The surgeon made an incision going from her belly button up to the bottom of her chest. He took out her left adrenal gland, the tumor and some lymph nodes. He also made an incision in her lower neck to remove some lymph nodes that had disease.
Julia amazes me at how strong she is. She really is God's little warrior. Pray that she recovers quickly so that we can go back home to our family. I miss my kids so much! It's so hard being away from them.
Yours in Christ,
Anita, I just found out abut Julia. I am so sorry for what you are going through again. Isaac is always in my prays and I thank God for the miracle that is Isaac. I will send out the call for a prayer chain for Julia. There is no reason to think you cant have 2 miracles. My prayers are for you and your family to be comforted and blessed in this time. I'm glad you have Ashley there with you. Take care of yourself and stay strong. xo