It’s Getting Very Real

Eli had his MIBG scan today.  Yesterday we stopped in to the radiology department for his radioactive tracer.  In most cases, neuroblastoma attracts the MIBG tracer.  The scanner detects the radioactivity from the MIBG, therefore allowing you to see where the neuroblastoma cancer cells are.

After speaking with our doctors today, we discovered that Eli’s body is MIBG non-avid.  (You could think of this in terms of being MIBG negative.)  This means that his cancerous cells do not attract the MIBG tracer.  Nothing shows up for him on this particular scan.  This happens in about 10% of neuroblastoma patients.

So…we don’t have a clear picture of what his tumor looks like in proximity to his pancreas. This was to be the deciding factor in whether to start with surgery or chemo.  This means, chemo first.

On Friday morning at 10:30 am, Eli will be in surgery to insert his central line called a Hickman Line.  This will be similar to a port in that it will be accessed for chemo and other procedures he will have along the way.  The difference is that unlike a port, this line is comprised of two tubes and will dangle from his body.  We will be able to tape it and cover it so he can still be active when he’s up to it.  But it means no swimming.  It will have to be covered well for bathing.

After this surgery, we will be admitted to the hospital.  He will recover for a few hours and then chemo begins.  He will receive two different chemo drugs for for five consecutive days.  All of this will take place in the hospital.  Then he will be home for 16 days.  Repeat.  A lot.  I will post more about his schedule and what we will expect from chemo in the coming days.

I am taking big, deep breaths.  Things have gotten very real and I will be honest and admit that I am scared.  I am having all kinds of flashbacks and triggers to my own experience with chemotherapy and I am really, really sad that my baby has to go through this.  But ultimately, we want him healed.  We want him better and back to his old self.

We suspect he is in a lot more pain then he lets on.  He is most comfortable at home, when things are relatively calm.  He was feeling good this afternoon and we thought it would be a good idea to have one last family fun outing before things get ultra crazy.  He picked mini-golf.  He was so happy to be there, but I had to push him in a stroller between holes because it hurts his legs so much to walk, and he only made it 3 holes before announcing he was done.  He was content watching from the stroller the rest of the time.  It breaks my heart, because typically he would be running around causing chaos.  Chris and I would be rolling our eyes and laughing at his crazy antics.  I just want that back.  He picked Culver’s for dinner and didn’t touch his food.  He moaned the whole time and sat on my lap.  Breaks my heart.

The big kids are being so awesome.  They didn’t complain when we hurried them through their golfing or made them wolf down their food so we could get home.  They are really caring kids and they just want their crazy brother back too.

I met with my “committee” last night and we are making progress on a help website.  This will include a variety of things.  If you have indicated you’d like to help, you should be able to find an area that appeals to you.  Chris and I will talk tonight after the kids get to bed to decide what this first hospital stay will look like for us and how we want to handle life at home along with life at the hospital.

Thank you all for your unending support and prayers.  We are extremely grateful to have THE BEST people.  The. Best.

Eli received his iPad today!  We are beyond grateful to a donor who wishes to remain anonymous for this most generous purchase.  This will be so wonderful to bring to the hospital and will get a lot of use.  He is very excited!

And so…we begin.

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41 Responses to It’s Getting Very Real

  1. Kristi Ruggles says:

    Your family is in our prayers. God, please protect and heal Eli.

  2. Jess Gossen says:

    Thinking of him (and you!) constantly. We are at the hospital weekly– I’ll message you after he’s had some time to adjust and get bored 🙂 Maybe he will feel up for a visit or a delivered treat!

  3. Lindsey says:

    God Bless your sweet boy!! May God carry all of you through this difficult journey!! We will be praying!! ?

  4. Mary McClellan says:

    My thoughts are with you, cannot even imagine what you are going through. Your family is in my prayers.

  5. Felicia says:

    Prayers for y’all
    Love to You

  6. Debbie says:

    Continued prayers! You and your family are amazing and I know God is holding all of you close!

  7. Stacey Newcomer says:

    My mama heart is broken over the thought of what Eli is enduring. I pray you are able to feel God’s comfort in the midst of your sorrow.
    “Cast all your anxiety (or worries!) on him because he cares for you.” 1Peter 5:7.
    I remember after my brain surgery being in so much pain that all I could do was just breathe. Your post reminded me of that time. I pray you feel stronger than you think you are
    “I can do all things through Christ who gives me strength.” Philipians 4:13
    I think you already know we live in the most supportive & loving community ever. I’m so glad there are ways we can help your family beyond the amazing power of praying for you. Looking back at my health scare, I can still remember the physical, palpable feelings I had of being prayed for. It was such a blessing. I pray you are able to see God’s hand in all these circumstances & be blessed by those around you.
    I will be praying for you Friday morning especially!
    Hugs, Stacey Newcomer

  8. Nikki L says:

    Praying … Many more prayers coming from friends around the country.

  9. Brenda says:

    Eli is front and center on everyone’s minds, in everyone’s hearts and in all of our prayers. Jamie, I am hanging on your every word feeling your struggle and pain. Amidst it all I can also feel your faith, love and determination. Thank you for keeping us all updated. My youngest son is 5. He has seen Eli’s picture and knows that he is sick. When his little hands fold together in prayer, he prays strongly for Eli, as we all do. The good Lord must be inundated with prayers at this point and we will all continue to keep those prayers going indefinitely. Love, The Feucht’s

  10. Carrie Williams says:

    One step, one day at a time. Praying for all.

  11. Marge//Clyde Schweitzer says:

    We are praying for all of you; for comfort, courage and the stamina to cope with all that you have to. You are loved and prayed for. I have Eli’s name posted in my kitchen and every time I see it I say a prayer for this “darling little tike”. The Schweitzers

  12. familyjulez says:

    Fear is a natural response…spin it around…you know chemo works. And while it sucks, the many years of being a healthy little bean will outweigh this stressful time eventually. Be sad, be afraid, be stressed, feel whatever you need to feel…but at the end of the day, know that he is under great care and is showered with love and prayer! You’ve got this girl…I’ve seen you in this situation before and you are exceptional! ❤️

  13. Mary Gundrum says:

    Thank you for updating us, I’m still trying to take it all in…. Be assured of prayers from the Gundrums.

  14. Samantha Ariens says:

    My sister and friend…. My heart is broken for you and your family. Eli’s “new normal” gave me flashbacks of our cancer treatment and my tears wouldn’t shut down. I’ve asked my island family here in Sicily to add Eli to their prayers. So, God is getting a ear full from people around the world.???. I wish I was in the states to help, but alas….. I love you Jamie with all of my heart? Samantha

  15. Jennifer Murphy says:

    I can only imagine how scared you are for the road ahead… I am so sorry. Just one day at a time, keep praying, keep loving, and keep fighting and you guys will prevail in this fight. Love and prayers your way.

  16. Bonnie says:

    Jamie – I’m so sorry that you, Eli, and your whole family are going through this. I am so happy to hear of Alex’s arrival. He’s SO cute! And then such devastating news about Eli at the same time. I cannot imagine how you can write a coherent sentence, let alone all you’ve written to fill everyone in on what’s happening in your life.

    I am sending prayers for each and every one of you. Eli was added to our prayer list at church (where we had our LLL meetings) on Sunday.

    Wishing Eli an easy surgery and few side effects from the chemo. And mostly, some peace of mind for you and the strength to keep your chin up. You have an amazing family and I know what a great mom you are. You will be able to do and be what each of your kiddos needs. Trust yourself. And know that I’m sending my love & prayers.


  17. Kary says:

    I am so very sorry your family has to go through this! I pray for all of you and the strength to get you through the daily challenges of the unknown. May you be blessed and comforted in your faith and know that you have many friends there to help.

  18. Heather Ragen says:

    Jamie, I can’t imagine being in your shoes for even one minute. Praying for you, Chris and your 5 darling “things.” I am ready to help when you need me.

  19. You have such a wonderfully strong family and faith….I believe St Jude will answer my prays for Eli. He is in my thoughts throughout my day and night. Keep remembering God walks with you and will take care of your wonderful family. Connie

  20. Kristi Ansley says:

    Oh Jamie. How heart breaking to see your spunky guy in such rough shape. How scary to be starting this long and difficult journey. You are an amazing mommy. You were chosen for him and he was chosen for you. You are stronger than you know. Sending lots of prayers.

  21. Betsy Kenyon says:

    Jamie, not sure who to contact, but I would be so happy to help in any way I can. If someone on the committee reads this, please feel free to message or contact me at any time 🙂

  22. Jill Sullivan says:

    Strong love blanketing all of you!

  23. Kristen Langham says:

    I cannot even fathom going through this, and with a newborn to boot. Wow. You are incredibly amazing and strong, and my love and prayers are being sent your way continuously. I would love to help from afar, whatever that may mean or be…I will look for options for ways I can help in addition to prayers.

  24. Oh, Jamie, I passed the hospital twice today, thought of guys, and said prayers for whatever was going on. I am ready for that help list!

  25. Uncle Buckwheat says:

    My heart breaks for you guys and Eli. We’ll continue praying for God’s hand to be in this and with you and to wrap His loving arms around Eli. Love you guys!

  26. Connie Van Galderb says:

    Eli has many people in Beloit and surrounding areas praying for him!

  27. Tanya Siderits says:

    Wishing Eli all kinds of super hero strength and same to you and Chris and your other superhero kids!

  28. Paula says:

    Thanks for the update you are in my Thoughts and prayers.

  29. Liz Allbright says:

    Thank you for this update and for setting up a help website! I’ve been thinking of you all and praying so much for Eli!

  30. Danielle (friend of Kristen and Jessica) says:

    Praying for you all!

  31. Nikki Tiutczenko says:

    Continued prayers! Thank you for the updates…we think and pray for you all often! I will help any way you need. Hugs ❤️

  32. Amy Ferguson says:

    You guys are amazing and strong. I have prayer warriors in several states praying for each of you along this journey.

  33. Renee Barutha says:

    I choose to believe that God is carrying Eli and the whole family. I envision the footprints picture and all of you are sitting on each others lap – totem pole style. At the base of this totem pole are the feet of our merciful Lord. So rest assured, The Hansens will be carried through this journey. God Bless

  34. Beth Stauff says:

    Jaime and Chris – please count my family and me in on anything you need!

  35. Angie says:

    You are all in my thoughts and prayers constantly! Thanks for the update, you are amazing! Real, honest, open, a gift to us all, especially to Eli! More prayers, and will be checking in with your committee!

  36. Kristen Halula says:

    Infinite prayers for comfort and healing for Eli, for strength and comfort for your whole family, and for wisdom for Eli’s medical team!

  37. I am crying for you. With you. Just so sad for all of you. Picturing Eli’s face constantly. I’m just so sorry. Praying and thinking of you all nonstop.

  38. Synara Brown says:

    Jaime and Chris… praying, praying, praying. There are so many people pounding on God’s door right now. You will get through this!

  39. Katie says:

    Continued thoughts and LOTS of prayers for Eli and the rest of your family!!

  40. Joanna Jaeger says:

    Thanks for the updates…Eli and all of you are on my mind constantly!!! Prayers that Friday goes smoothly and Eli can begin the long healing process. Let me know when you need me to help out.

  41. Meredith says:

    Thank you for taking the time to fill is all in. You and Your family are in my thoughts constantly. I will be sending love and serenity on Friday morning ?

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