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Tuesday, December 11th

Hello all, Please click on the link below to see service arrangements.
With Love and Gratitude
Recent posts

Saturday, December 8th

As many of you know by now, our sweet boy left this world this morning at 5:30am. Our hearts are broken. Thank you all for your continued support as we try to work through this. We will update you all about calling hours and a service in a few days.

Monday thru Thursday December 3rd - 6th

Hello Everyone,

Last chance to get an Otto Strong T-shirt if you haven't already. Here is the link: Order by Sunday.

It has been a long difficult week. Otto's nights are still restless with bathroom trips, occasional coughing, nose bleeds, and nausea. We've peeled back some meds to help relieve some of these side effects making him more comfortable and we've increased his pain medication to alleviate his pain.
His baby tooth bleeding has finally gotten under control after several days trying various techniques from some starch/potato powder, gauze with pressure, amicar(spelling), "magic mouthwash", gel gauze, to some surgical glue - sorry,  that was not too specific with the medical names, but rest assured it was a lot of attempts and failures, but finally not bleeding! Throughout it all we were down as low as a count of 2 for red blood cells and 8 for platelets. Otto received several bags for support. 
Monday thru Tuesday: Otto …

Friday, Saturday, Sunday November 30 to December 2

Hello All,

We've had a busy weekend that started off with an Ugly Sweater Funder Friday with our friends the Mahoneys! What a great way to start the weekend with good friends decorating, playing fun games and just being together. Saturday and Sunday were busy days too, with visits from Granddad, Aunt Laura, Nagys and Lowells . It was so nice to be with everyone and talk, eat, joke and just be together.

Our nights were a little less fun with Otto's coughing acting up some and a little nausea to top it off. This kept us pretty sleepy throughout the weekend and we are in the peak effectiveness of radiation and chemotherapy, so that is contributing to his exhaustion. His Leukemia Cutis is aggressive and he's been having some fevers which could be caused by the leukemia and/or the treatment. We're hoping there is some relief for him in the coming days.

He also lost one of his baby teeth Saturday night from his only chewing side of his mouth, due to the leukemia cutis on tha…

Wednesday and Thursday, November 28th and 29th

Otto has been fighting hard these last two days.  However, we are pleased to say that last night was a great one for him.  Otto was able to sleep pretty well with little coughing and no visible signs of bleeding from the lungs.  He is still dealing with the cutis spot that has been growing in his mouth, but can take meds in order to prevent it from bleeding. 

Today was a great day.  Otto woke up, ready to go around 7am.  He wanted to take a shower, which he did, followed by taking a walk.  We all went out to the Healing Garden where we found it to be a little too windy.  Otto was convinced that he needed to go back in and quick!

Our wonderful friend from Child Life at Yale stopped by with a special gift for our family.  She brought us a  6ft Christmas tree (artificial, of course).  We brought ornaments from home and had a decorating party.  Otto was really happy that we could all be together sprucing up the tree and playing Daddy's new favorite game, What's your Favorite? 


Monday & Tuesday - November 26/27th

Hello all -

Today is Otto's 5th round of Chemo and 3rd round of radiation. After this we have 7 more days of radiation.

Last two nights were tough ones because of Otto's bronchitis recovery. His coughing fits can be intense and painful. While we saw some improvement Sunday night in his phlegm, he has been coughing up blood the last two nights along with nose bleeds triggered by intensity and duration of his coughing. Needless to say, we haven't gotten much sleep. The resident on last evening worked out a good plan to stem the bleeding and reduce the coughing with platelets, plasma, morphine, octreotide, and humidified air as well as sleeping position.

The cutis inside his mouth also started acting up Monday evening and bleeding. Somewhat of a unique and complicated bleed location to manage. Our wonderful nurse Lise-Ann came up with a solution of "Magic Mouthwash" and gauze wrapped around his head holding the gauze in place in his mouth so it wouldn't slip. Ho…

Sunday, November 25th

Hi all.

Day 3 of chemo is complete.  We will be starting Day 4 of chemo tomorrow, alongside Day 2 of radiation.  He tolerated the chemo very well today.  Otto had a better night last evening.  He slept longer in bits and had less coughing attacks.

Today we discovered that his cutis is now forming on the inside of his mouth.  This can make eating a little challenging, so we are headed back to soft, easy to chew foods.  Otto is such a trooper!

Towards the end of the afternoon, we were noticing signs of some internal bleeding.  He's getting some platelets along with plasma to help with the bleeding.  We are thinking the bleeding could possibly be a result of all the coughing episodes he has endured over the last few days. 

We continue to pray for healing.  We thank you for your prayers, too!

Mark, Leigh, Otto, Tess and Lulu