Yesterday Soren awoke with the annoying challenge of not being able to eat until lunchtime because another spinal LP with medication was scheduled. This one took a bit longer and hence he was a bit more groggy, but the languor of the day was just starting.

For the parents, we reached a new level of frustration. It would take too much time and text to detail this adventure, so here’s a synopsis. First, we got the incredible news that Soren might be released that day. Think the “now boarding” announcement.

Next, Soren came out of procedure well, and they said, yes, good to go. Hooray! “Doors are closing, ready for departure.”

But wait: we needed a long list of prescriptions to be filled, and our home nursing set up, so not just yet. A time was given, Vaughn hurried to the car to start driving to try to beat traffic, and then Erika called saying: “don’t leave yet. There’s a problem.”

The next four hours were the equivalent of sitting on the tarmac waiting for takeoff, where the possibility of Soren being released continued to dim. The reason? A series of mystifying conflicts with the prescription medicine subcontract of our insurance, who didn’t want to approve Soren’s special medication to help rebuild his white cell counts. In the end, Dana Farber decided to use discretionary funds to donate the medication to us so that we could go home and not be admitted for another day. Remarkable: keep them in your well wishes.

I drove down as fast as possible, and by the time we loaded the mountain of gifts, decorations, and clothes from Soren’s room, Erika had received the lengthy nursing tutorial, and then, Soren got unhooked! We were able to walk out, no chair, no wires!

After a restful night for Soren and a few hours of sleeping like the dead for the parents, little brother Harlan woke up with the excitement of Christmas morning. Big brother was home! We are going to enjoy these days as much as we can until the next cycle.

Watching Peep together again

P.S. Another fabulous dinner from our friends. Even picky Harlan devoured it. So many thanks!!


12 thoughts on “home!

  1. Alicia says:

    Vaughn, I can’t tell you how many times I have wanted to reach through the phone and strangle someone who is simultaneously telling you that they will not pay for your patient’s outpatient prescription… but are aware that not doing so may mean that the patient has to stay in the hospital another night, which they will pay for… Regardless, so glad that you guys got to go home! Scott and I send our love from L.A. -Alicia


  2. jen says:

    It was so good to see Soren headed go the pool yesterday afternoon 🙂 I hope things are going well!! ❤ thinking of you all often!


  3. Sara & Brett Hellstedt says:

    Hi Vaughn. Both Brett and I have been thinking about you and your family so often. Sending you much love and positive thoughts always.

    Sara & Brett Hellstedt


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