Friday, February 20, 2015

Friday #GoHugo: An Update.

An update from Marianne:


Chemo is DONE. Ten rounds over eight months. A total of:

15 doses vincristine
4 doses doxorubicin
6 doses cytoxin
4 doses ifosfamide
4 doses carboplatin
5 doses etopicide

So...Hugo is done, right? Not quite.

Currently Hugo has no immune system after his final round of chemo. He will mostly recover over the next week but will have a weakened immune system for a few months.

Next up are a set of scans, scheduled for next week. These will determine whether he can officially be finished with treatment.

Hugo still gets IV nutrition through his central line at night. We have been weaning him from it and he's down to 8 hours a night (from a high of 20). We have to get him off the IV and stable before his central line can be removed. His remaining kidney was taxed by chemo, leaving Hugo with an electrolyte imbalance (Fanconi Syndrome), so weaning has to be monitored closely. He also still struggles with eating and drinking enough.

Once the central line is out, life will begin to get back to the new normal. Hugo will get his first real bath in months, for starters. We are anxiously looking forward to him being cleared to get up-to-date on his vaccines. He will continue to have regular scans.

So, chemo is finished and we are definitely in the home stretch, but he isn't quite "done". Not yet. #‎gohugo

15 comments:

  1. Go Hugo! Have a wonderful summer this year, little one!

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  2. Go Hugo GO!! I don't know what else to say but I am amazed at his progress and your family's strength through this. I pray for a wonderful new normal for you all.

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  3. I don't comment often because I follow you on my phone. But I had to log into day hooray! Go Hugo!!!

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  4. Congrats on successfully making it to this stage!!! My (now healthy 8 year old) daughter was diagnosed with B-cell leukemia at age 2.5. One foot in front of the other. The agony you have endured is almost unbearable, I know. Hugs and #GoHugo!!!

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  5. Go Hugo! So glad to hear this news--he continues to be in my thoughts and prayers.

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  6. What an incredible kid. Keep up the fight that none of you asked for.

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  7. Brave little man! Go Hugo!

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  8. Aw, go Little man! Hugs to all of you, I wish him a full and complete recovery x

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  9. Stay tough little guy! (and Mommy!) You guys have been incredible!

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  10. Go Hugo! I've been following and thinking of your family!

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  11. I've held your family in my heart this whole time and am cheering for little Hugo and so pleased with his progress. What a time - so close to the finish line.

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  12. Hugo, you're amazing- we're all thinking of you - GO HUGO!

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