Gratitude

I'd like to begin by thanking everyone for their generosity. My cousin Rachel came to visit us last Friday and handed us a gift that I understand was a collaborative effort on all of your parts. We are overwhelmed and humbled by the support that our community has give to us. There are no words sufficient to say thank you. An extra big hug to Rachel for orchestrating the gift, it has already brought facets of relief to our stressed out and overburdened minds and spirits. In addition to that. the gifts that arrive never fail to brighten Tessa's day. On the Roos side of the equation, my in-laws have become so important to me. Noni and Papa, your support is unflagging. Deedee, it is not only a blessed break for us when you come and read with Tessa but an absolute joy to see her smile; one could say it is "happy hour"; Mike, Dylan and Kelly we love you guys so much!.  Julie, your sweet disposition and your beautiful girls bring Tessa so much happiness; Jeff, you are my partner in being married to the Roos clan-we both know the kind of strength that requires (heeheehee). My friend Katie, you have given me strength and support that I never expected. Thank your for the love that you, Marco and the girls share with us; Marc, we know how you hold Tessa is your heart and it makes us love you all the more. Eric, your emails are eloquent and kind, and your sense of humor when we see you is buoying; Jack you are a wonderful spirit. Thank you Roos clan for rallying and lifting us up in this time of need. To my friends and all the amazing people who have reached out to us, thank you. I know I rarely get time to call, but your reaching out, the photographs, texts all mean so much to us.

My Roos family

As for what's going on this side of the central coast...

It's hard to believe how busy we are accomplishing nothing. Everyday is a whirlwind of activity. Because Tessa has so many doctors from so many different specialties looking at her case (let's see...we've got oncology, orthopedics, infectious disease, gastroenterology, rheumatology, immunology, genetics, pain clinic, complex care, endocrinology...what is that 10 specialties? And I know I'm leaving some out) it is a never ending parade of doctors in and out the door.

My IV pole has more machines than yours!

On Monday Tessa started steroids. These will address the inflammation in her body that is what the doctors think is causing so much bone pain. There has been talk of boosting her dose from the 2mg/kg/day to 30mg/kg/day which is a HUGE dose. The idea would be to blast the inflammation and see what happens. Fortunately things got thrown in the mix and caused a delay (which is par for the course we have discovered). Yesterday Tessa woke up with a big smile and spent the day walking around for the first time in weeks! Today she couldn't run around enough. She has been naked for the last couple months because of how hot she always feel, but we do try to insist on at least panties and shoes for outings. Needless to say she got more that I few smiles as she ran up and down the halls of the hospital in her pigtails and panties! Because she is exhibiting such a great response to the lower dose of steroids, we are re-evaluating the pulse. She will be getting some labs drawn in the morning to measure her SED rates (measures inflammation), and after that we may actually get to leave the hospital for a few days!

On Tuesday Tessa had a PICC line put in, which is a semi-permanent IV that is placed in the arm and run to into her chest where it accesses the main blood supply. It required sedation to have it placed, but it never goes bad and you can draw blood from it and use it for fluids and medication. This means NO MORE POKES! What a relief.

We will be staying in Los Altos through the weekend, as Tessa is scheduled for some rather uncomfortable procedures on Tuesday of next week. To address her mysterious, ever-present stomach pain gastroenterology is going to do both an endoscopy (camera scope down her throat to check out her stomach) and a colonoscopy (pretty sure I don't have to explain that one). For some reason these procedures make my stomach twist in a way that others haven't. I guess it seems so invasive of my beautiful little girl.

We're hoping that she continues to show improvement so that we can go home to SLO after that. I haven't been home in a month, and it feels as foreign as everything else at this point.

Love to you all. Thank you for the support and prayers.

Tessa loves reading books with her DeeDee!!!