Lucas Update: We had prayed for better news, but we found out yesterday that Lucas’s cancer has moved to his bone marrow and he is now categorized as having high risk Stage 4 Neuroblastoma. What this means is that he stands a very good chance (90+%) of making it through this first full round of chemo (1-1 ½ years) but there is a 50/50 chance it could come back almost immediately. Remember there is also a 50% chance that it will not and he will be cured! (Keep your focus and prayers on that side of the equation, please) It is easy to slide into the “dark side” and I keep finding myself there, but I read your posts and it helps to lift me up. Thanks for those! We did receive some good news; he had a full nuclear scan (to show if it was other places) and it shows that it is only showing up in a small spot on his left femur. (which is a simple spot to radiate) The doctor told us that he has seen far worse scans and has had complete recoveries from them!!! Lucas will receive his broviac (port) today at noon and start his chemo on Friday. He is expected to lose his hair in 3-6 weeks and the day he loses his hair, I will lose mine. I will regrow it when he regrows his. He will look cute bald, but me, not so much! Although we are scared, we are comfortable where we are at. Our faith is strong in God that Lucas will recover from this and live a long healthy happy life! We can feel all of your support, your prayers and your love on a daily basis. We love the hospital, the Dr’s and especially the nurses and Child Life Specialists. Devos Children’s Hospital is the most amazing place I hope you NEVER have to see! We found out after we came here that the world’s leading research specialist in high risk Neuroblastoma is here at Devos, and this it is one of 12 hospitals in the U.S. that specialize in Neuroblastoma cancer. People come from other cancer centers and around the world to be treated for NB here. We couldn’t be in a better place! I couldn’t have done this without Erin. She is my rock! Many times I am a sobbing mess, (never in front of Lucas) and she is rock solid. We’ve traded these roles a lot over the last week! Hannah and Charlie got to come up and see Lucas on Tuesday! Lucas doesn’t feel well, so he doesn’t want to play and just seems sad and depressed, but he was happy to see them! We had “the talk” with Hannah and Charlie with the help of Ryse (reese) who is an amazing child life specialist here. He explained how the “lump” in Lucas’s belly is bad cells and how the doctors will hopefully fix it. Charlie could care less and wandered around and played, while Hannah tried her best to follow along. When he handed her a bear to give to Lucas that says “Cancer is stupid” on it’s shirt, it sunk in. I will never ever forget that look in her eyes when she realized her brother has cancer. I don’t think my heart could have broke any harder. (We have had three friends who we have prayed for and have died over the last few months from cancer, and Hannah knows that is what killed them.) She and Erin left the room immediately, as Hannah asked to speak with her alone and asked all the “hot questions”. Death, angry that God makes people sick, etc. She is doing better now and we will monitor her on this. We are so humbled by the prayers and support so many have given us. (The iPad, the cleaning crew, the food calendar, the gift cards, etc) Erin and I find ourselves struggling to accept the money and gifts people have given. It doesn’t feel right to us to take it, but as we were sternly reminded by our dear friend Jeff Osburn is that “people really just want to help, so take it!” They see this tragedy and feel that giving makes them feel like they were able to do that. So… with that said; many of you have asked how to help, so our friend Brian Rosekrans has set up a GoFundMe site to pay for the expenses we will incur over the next few years. (He set it up as a goal of $1M dollars! I love that kid! He said he tried to put in $1B but it wouldn’t accept all the zeros!) Here is the link: gofundme/cbu3is In addition, our dear friend Brittany Jackson has put together a Facebook page called Leauge of Lucas=LOL which will have updates, pics and other info. Please consider joining it, so you can stay up with Lucas’s recovery. At some point we will only post there, so you are not getting repeat messages hogging up your news feed. Here is the link: https://facebook/pages/League-of-Lucas-LOL/680795121969538 Ok, that is enough reading. Please keep praying, keep the faith and keep loving each other! God bless all of you for all you have done for us. I know many of you have shared my initial status, so feel free to share any of the info above. The more prayers the better! As Erin said yesterday, “It looks like Lucas will have to fight for his right to party!” I like that! And I like her and him! Michael
Posted on: Thu, 31 Jul 2014 11:37:08 +0000
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