Delay in the Plan

Sorry, this update is long overdue.

The last we posted, Eli was admitted into the hospital due to a fever which turned out to be typhlitis.  This required ‘gut rest’ and white blood counts to return.  Gut rest required us to stop oral feeding for a week and give him IV nutrition.  To cut to the chase, Eli was able to leave the hospital on August 23rd, after 10 days in the hospital.

This was the first delay in treatment as we we push forward towards Stem Cell Transplant, SCT.

Between August 23rd and now, Eli had a couple follow up items to see how he has responded to the first phase of treatment.  Additionally, there was some pre-work items to see if he was ready for SCT.

We gauge how much cancer remains in Eli by the Bone Marrow Biopsy and MIBG scan.  The news according to Dr. Browning is: “Good but not great.”

Based on the bone marrow biopsy, the measurement of cancer in his bone marrow went from 100% in April, to 60% in May, to <1% in August.  Was hoping for 0%, but still good news.

According to the MIBG scan:
“Significantly improved uptake throughout the osseous structures, with mild residual uptake seen vertex and right proximal tibia.”
Translation: The MIBG scan shows that cancer is still at the top of his skull and the top of his right knee.  We were hoping for no disease, but this is still good news.

The biopsy and MIBG mean that Eli qualifies for continuing on with treatment.  Sadly, there are cases where this is not true.  There are cases where the cancer does not respond to chemo and even progresses.  So we are thankful for being blessed with decreased cancer cells.

Now, on to SCT, which requires numerous tests to verify Eli is well enough for treatment.  This included: NM Renal Scan GFR, Echocardiogram, ECG, Head CT, Chest CT, blood work, urine test, and psych exam.  The final results are that Eli was well enough to start SCT on September 12th.

This is where the second delay occurs.  On Saturday, Sept. 10th, Eli started to have flu like symptoms of fever and running nose.  Tests showed that he had Rhinovirus which has been a prevalent virus as of late.  So the decision was to delay treatment until Eli got better.  He’s now scheduled to have a follow up on Monday, Sept. 19th, to determine if he is ready for SCT.

Besides all the events pertaining to treatment, Eli had some really great experiences.  On August 31st, Eli got to tour the Village of Pewaukee Police Department and also meet members of the Waukesha County Sheriff’s Department.  On September 8th/9th, Eli went to 4K at Pewaukee Lake Elementary. We have pictures and links at Eli’s Super Squad Facebook page.

Speaking of Facebook, with our busy life of having 5 kids, one being a baby, sporting activities for the big kids, and Eli’s situation, we tend to post a lot more quick updates on the Facebook page (search Eli’s Super Squad).  So if you’re using this blog as your main place of updates, we probably will have limited updates here.

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6 Responses to Delay in the Plan

  1. Nicci Sternitzky says:

    I think of you guys often and hope things are going as good as they can! You know I’m here if there’s anything you may need!

  2. Kathy Zanotelli says:

    Always praying for your whole family???

  3. Cindi Petre says:

    Thinking and praying for all of you.

  4. Ruth says:

    Thankful for the update. Praying for your family, so brave!

  5. j4a4 says:

    What a beautiful image Jamie and Eli at the pond yesterday, made on my mind. Always pulling for him. Good luck, little guy!

  6. Amanda Dwyer says:

    Thinking of you all and sending our love.

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