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Friday and Saturday, November 9th and 10th

A good morning to you all!

Otto's last two days have been great ones.  He's been enjoying seeing visitors and hanging out.  He's also still insisting on watching Marvel movies!  A big thank you to the Murphy family for supplying us with some of those.  It makes the rainy days go by faster, for sure!

We had a brief discussion with Boston Children's the other day.  After speaking to an oncologist there, along with our primary oncologist at Yale, we have decided to put some things into play.  The first part of our plan involves time at home.  Otto is now stable - no signs of internal bleeding, no fever, no upset stomach.  It looks like the food we have been slowly incorporating back into his diet, along with certain meds, are helping him to become stronger on a daily basis.  The plan is to come home possibly on Tuesday and be at home through Thanksgiving.  After Thanksgiving is over, we are scheduled to come back to Yale for the next part of the plan.

One thing we have mentioned before is that Otto's leukemia cutis (part of his AML) is back.  There are now more spots developing on his arms.  We knew there was a risk with this happening when we gave him the shots that boosted his immune system in order to fight the fungal infection.  So now we are almost in limbo.  If we give heavy duty chemo to knock out the AML, the fungal infection will grow and take over.  If we just keep giving anti-fungals with no chemo treatment, the AML will take over.  After discussion and research, we have decided to give him a 5 day course of low dose chemo.  This is a risk, however, we feel we need to do something rather than doing nothing.  With the 5 day course of the low dose chemo, we are praying that this will be able to keep the AML at bay (or even help improve it) while allowing his counts not to get so low that he will hopefully continue to be able to fight against the fungal infection with his neutrophils alongside anti-fugal meds.  This is his best shot at fighting both of these.  We will need the spiritual support of our friends and family more than ever.

One thing that happened Friday (that was pretty amazing in our book), is that Otto had a visit from a great guy named Jake.  Jake Teitelbaum is a cancer survivor, who a few years ago, developed a non-profit sock company.  His mission is to help families who are struck by cancer to raise money to cover their needs.  Those who are with cancer, can develop a design, which Jake and his team then take and help create these one of kind socks.  These socks are then sold to the public.  We learned about the company during our first month at Yale and thought it was pretty neat!


It is one thing to hear the story of a survivor spoken through others, but it is even more powerful to meet them in person.  Jake is an outstanding young man who brought a high sense of hope to Otto.  His words of encouragement were ever so inspiring.  If you have a chance, check out his company website - https://www.resilience.gives.  Take a look, hear Jake's story, and if you feel moved, support a campaign.  We have plans to develop our own "Otto Strong" socks next summer to support our fundraising efforts when we participate in the Closer to Free road race next September.  All of the money raised by our group will be given to the Tommy Fund Clinic, the Pediatric Hematology/Oncology Clinic at Yale.

As always, many thank yous are being sent to all those who support us!  We are an incredibly lucky family who has relatives, friends and a community holding us in their thoughts and prayers!!

With love and gratitude,

Mark, Leigh, Otto, Tess and Lulu


Comments

  1. So happy to know you’re going home! Your crazy dog will be so excited! Can’t wait to see what the Otto Socks will look like- I know they will be in high demand once you design them. It was great to see you the other day. Keep up that positive attitude - it’s definitely working!!
    Much love-
    Mrs. Grieder

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  2. What wonderful news! There’s nothing like being home for Thanksgiving!
    Enjoy every minute!
    As always our positive thoughts and prayers are with you all!
    Joan and Ken Benson

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    Replies
    1. This is so amazing!!! So glad he’s able to come home for a period of time. Keep on fighting Otto. You’re doing great kiddo!!! Love you all!

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