Thanksgiving

Well, I think it’s time for the obligatory Thanksgiving update. Actually, it is quite good timing because I called NYC this morning and received some good news. Eli is still HAMA negative, so we will be able to go to NY for a 9th round of 3F8 January 5th-9th! Now that is something to be thankful for (just add it to our very long list)! Also, Eli’s HVA and VMA scores (urine test) came back normal! 13 for HVA and 4 for VMA for fellow Neuroblastoma parents that know what that means. Keep in mind that Eli’s VMA was off the charts a year ago when he registered over 800! The urine scores can be a good indicator of whether something is going on inside that is cancer related that might not yet be showing up on the scans. So, as a recap, Eli still has no evidence of disease as his MIBG, CT, MRI, bone marrow biopsies, and urine all came back normal. To say that we are thankful would be a great understatement.

We have been forced to depend on God for wisdom, patience, and peace. Trust me, we were forced. If we felt like we had any sort of control over the situation, we might not have depended so completely on Him. A true lesson I learned for future trials, no matter how big or how small, is that complete dependence on God’s goodness and presence is sufficient. Things might not go the way I want them to (I wouldn’t have chosen to allow my three year old to get cancer if I had the choice), but God knows what amazing results can come of it if we are faithful to count on Him and look for the opportunities to praise Him.

We have met so many amazing people over the past 17 months. We have seen great progress with Eli’s treatment, and all while maintaining what we feel has been the highest quality of life possible for him (under the circumstances). We have felt the love and support of thousands of people around the world. Most of all, we still have our little boy with us that God loaned us 4.5 years ago. We have become close friends with many moms and dads that can’t say that this year because their child had completed their task and it was time for them to go home. Our hearts ache for the void they will have at the Thanksgiving table tomorrow, but I can say that those parents that we grew close to have earned eternal rewards in heaven for the way in which they handled the situation that God allowed. God’s purpose was fulfilled in the lives of those kids and the parents will continue to count on God to get them through the really tough times that are coming up as they try to celebrate the Holidays with that gaping hole in their hearts.

So while we are thankful for some pretty life changing truths this year, Eli is thankful for the things that a four and a half year old should be thankful for. I asked him tonight what he was thankful for and his first response was, “NOODLES!” 🙂 He said he was also thankful for his friends that were in New York. He has made bonds there that he will have forever, much like we have.

I went back to my old CarePage updates to see what we were doing this time last year and I was reminded that this was about the time we officially made the switch to be treated in NY. The day before Thanksgiving was the day that Blank Children’s Hospital in Des Moines decided they didn’t want to administer the chemo that Dr. Kushner wanted us to. The day after Thanksgiving was the day we got in the car and headed to New York, where we stayed until March 6th. Until now, we have never been home for more than 3 weeks straight, so to be home for 8 full weeks is definitely something we are extremely thankful for!

Last night, Eli gave us a scare by saying that his legs really hurt. Other cancer parents know the feeling of trying to decipher if your four year old’s leg pains are ways to get attention, a small pain, or cancer relapsing at a fast rate and causing bone pain. We remembered how our nurse practitioner in NY told us that it is common for there to be residual leg pain in 3F8 patients for days, weeks, months, even years. So we tried not to let our heart rates skyrocket and sure enough, today his legs felt just fine. I swear, if it wasn’t for the fact that it is a form of radiation, we’d have an MIBG machine installed in our basement so we could scan him every night before he went to bed. Instead, we are forced (there is that word again) to depend on God as the Great Physician and trust that He has the situation under His control. We often hear of kids that relapse after 1-2 years of being NED, so our comfort level in Eli’s NED status is zero, but our comfort in God’s plan is high. That’s easy to say when things are going well, I know, but even when things weren’t looking good for Eli, we were totally dependent on God. When people would ask us, “How do you do it?” our answer was simply, “You just do because you have to.”

I don’t know what God has in store for our family, I really don’t. I do know, however, that He is in control and He is worthy of our praise. Daniel 2:20-21. Happy Thanksgiving everyone. To all of you reading this update (or hearing it being read to you), we are thankful for you and your support.