Blood Thirsty

Our week at home in SLO has been a whirlwind of activity. Tessa was feeling pretty good all week, and had a great time seeing her friends. We had a little bbq to celebrate my birthday, and it was great seeing friends and having everyone feeling good. Nana and Poppie spent a few days with us, and Tessa had a blast playing with her grandparents. Tessa's Auntie Rachel and Uncle Keith came up for a visit from SB, and upon learning of their visit Uncle Mattie and Auntie Kristina came down from SF. It was a full house, but Tessa was thrilled! Unfortunately, Tessa took a turn for the worst on Saturday.

For the last couple weeks Tessa has been experiencing some moderate tummy pain. Saturday night it ballooned into major pain. Casey and I took her to the ER around 1:30 that night, where the doctor was totally unhelpful and clearly didn't take the bedside manner class in med school. We returned home and began giving Tessa some of the oxycodone that Stanford had giving us for her bone pain. She managed a little sleep, but Sunday was crying and screaming in pain and we went back to the ER. After 5 hours in the ER, and a bunch of morphine later, we got some labs back that said her hemoglobin levels were down to 6.9. She was admitted and given a blood transfusion last night. Mommy "slept" beside her in the cot. The nurses had to check her temp and blood pressure every 15 minutes to make sure she wasn't having a reaction to the transfusion. Between that and needing morphine every two hours it was a pretty restless night. Today has been mainly about pain management. She has been having a lot of pain, so the doctor has worked out a pretty intensive cocktail of morphine, oxycodone and a few other things I can't pronounce.

The future is uncertain and being based mainly on her pain and our insurance, which has been extremely difficult (I'd venture to say that they are actually trying to prevent us from getting the best possible care for our girl: evil is the word that comes to mind). We are switching to a PPO as of Wednesday, and depending on several factors we may be transported up to Stanford.

Keep those prayer circles going and those candles lit.

Smile! We're in the ER. :/

Diagnosis: Keeps going...and going...

We're back in Los Altos after a few days at home. It's been an exhausting roller coaster. Monday I received a phone call from the doctor saying that her white blood cell count was up, and the most likely diagnosis was going to be leukemia. This news hit me like a ton of bricks (and I would have updated you all, but we didn't have internet the entire time we were in SLO- curse you AT&T!). I had been feeling optimistic that the fact that they couldn't find anything so far meant that she didn't have leukemia. So we schlept ourselves and our car full of stuff back up here on Wednesday. We had a really good dinner with Auntie Katie, Uncle Marc and the incredible Sam and Elle. Tessa LOVES her cousins so much, she kept asking us when they were going to come to her house! It was wonderful hanging out and having such a relaxing (and delicious) dinner.

Today we spent another day at the hospital. It started out with Tessa having to fast until 1 (which is tough for a 3 year old, do not doubt it). They did an ultrasound on her tummy, which was a rather pleasant experience for Tessa-laying on a bed sucking on a lollipop and watching Dora while a handsome radiologist massages her tummy with warm goo. From there Tessa had some more blood workups done, and then a long consultation with the Oncologist (the fabulous Dr. Krysta), her fellow, a geneticist, his fellow, and the social worker. It was very crowded. We were extremely grateful to have the indefatigable Papa there to listen, ask questions and help us translate.

The message was this: Tessa does NOT have leukemia. Right now. If you are scratching your head, join the club. This means that it (whatever it is) could become leukemia, but the tests have confirmed that she doesn't have it at this time. Beyond that her hemoglobin levels have dropped (anemia), which explains her extreme fatigue lately. Otherwise, they still don't know what's going on. They have one of the top bone docs in the country coming in on Tuesday to look at her x-rays, they want to do some DNA testing, but we're just in for a long wait. We'll be heading back to SLO with the expectation that we'll be visiting the pediatrician weekly to monitor her blood levels and keep an eye on her. The docs at Stanford all know who Tessa is, and her case is making it's rounds through experts of all fields.

Thank you all for your prayers, perhaps that is what is keeping her from getting worse. We are all grateful for your support and love, and I am awed by what a demonstration of good will has come pouring out of this experience. We will keep you all posted as we find out more.

Thank you "Uncle" David and Auntie Emily for the elephant (and mints ;) ), and Uncle Eric and Uncle Jack for the super cool camera! Tessa is now a budding photographer and loving it!

Biopsy: Part 2

Today Casey and I dragged ourselves out of bed at 5:30 to get ready for another long day at the hospital. We got there at 7 for our appointment, but due to some mix up on their end we didn't get going until about 8:30. Most of the trips to the doctor consist of us comforting Tessa about the fact that she either will or won't be "getting a needle" again that day. Luckily today we weren't anticipating any needles (while she was awake). She was a trooper as usual and did a great job with all the blood pressure, temperature taking, and gas masking. Because of the difficulty that the doctor had had getting to the liquid marrow on Monday, they were preparing for an extra entry point-the two points on the back of her hips where they entered last time, plus one entry point on the front of her hip. What was a 20 minute procedure last time took an hour this time.

When we got to the recovery to wait with Tessa until she woke up from the sedation the doctor (head of Pediatric Oncology performed the biopsy this time) came by. He said that he still had been unable to get to the liquid marrow, and he had really been pushing hard (his exact words were "it was a real workout", which just made my heart ache for baby girls' body). He was able to get some good core samples though (solids of the marrow). He walked us through some of her lab work from the previous day, explaining that her blood counts looked pretty good, but she is pretty anemic. He showed us how some of the cells in her bone marrow were going gung-ho as though they were fighting something off, and other levels were elevated showing inflammation. So this information paired with the unusual density of her bones was enough to show that there is something wrong, but again they're not sure what. Um, ok.

The lab results came back from today's blood work with some scary numbers, so they decided to take another sample while Tessa was still asleep so they could double check the levels. While they were attempting to take another sample through her IV, the line blew flooding her little hand with saline. The pain woke her up, which meant that we were going to have to do another blood draw while she was awake. Sigh, it is Friday the 13th though isn't it. We got through it fine and the levels came back fine (relatively speaking).

The results from this biopsy won't be back before Tuesday, so we are heading home for the weekend. We are looking forward to sleeping in our own beds and watering our undoubtedly dead houseplants (good thing there's only a couple).

This afternoon we all took a long nap together and had a quiet evening at the ever-generous Noni and Papa's house.

Thanks to everyone for their ongoing support, loving messages, cards and gifts for Tessa. We are very grateful for your prayers and love.

Really...?

Short update...went to the doctor today. The long and short of it is that her labs are looking pretty good, so she's stable enough to not require hospitalization. They were not able to get anything useful from the last biopsy, so they will be repeating the procedure tomorrow morning at 7am. They are no longer sure that it is leukemia, though they aren't ruling it out. There is definitely something wrong with her bone marrow, and there appears to be something going on with her bones (they are thicker than normal?!?). Essentially the doctor said that she has been consulting with tons of doctors from a bunch of different specialties, but they are pretty much stumped as to what is going on. We are frustrated and tired. Tessa is a brave and amazing soul to undergo such torment. We probably won't get any results til early next week.

I'm beat and going to bed.

A Day Off

So, yesterday we received a call from the doctor. She said that so far the results of the biopsy were unclear and that they may not be able to get a clear picture from the sample they took. To make a long story short she said that it still looks pretty likely that it's leukemia, but to be sure they may have to do another biopsy. This was a major shock and frustration for us. We just want to know what is going on and get on the road to treatment. Our appointment was rescheduled for tomorrow (Thursday) with a probably repeat of the bone marrow biopsy on Friday.

Since we had another day before our return to the doctor, we decided to take full advantage. We headed into the city with my parents-Nana and Poppie. We went to the Aquarium of the Bay where it was air conditioned (it's been like 100 up here in Los Altos!). 

Tessa and Daddy playing with the starfish.

They had these really cool tunnels full of rays, fish and sharks!

Tessa loved the BIG fish!

We got to pet a ray, and mommy even touched a shark!

Overlooking Alcatraz and the Bay.

Lookin' good!

Really fun Merry Go Round!

So, hopefully the doctor will have something to report tomorrow and it will be enough to avoid another biopsy. We'll keep you all posted!

Special thanks to Lindsey, Gabriel, Jonah and Riley, and Colby, Zoe, Quinn and John, and Steph and Ferd for the cuddly, fun and delicious gifts!

Diagnosis...Part 1

What a frustrating day. We packed up all our stuff and loaded up the car, feeling confident that we would not be returning to Noni and Papa's tonight. We got to the hospital and they got us in relatively quickly, which was great. As usual the staff was super nice and helpful. They even got Tessa a birthday present!

We went through the rigamarole of answering all the questions (FYI, chewing gum is not ok prior to anesthesia-who knew?) and signing the paper work, sigh. Tessa was sedated and taken in to surgery for the bone marrow aspiration from both her hips. The procedure was relatively short, and we were reunited 45 minutes later in recovery.

Here's our baby girl in recovery before waking from sedation after the biopsy.

She woke up groggy but happy and we went to meet Nana and Poppie to await the results. After a half an hour we were whisked into a consultation room with our doctor, the wonderful Dr. Krista Schlis. She let us know that the initial look at the biopsy did not show leukemia. However (before you get excited), this doesn't mean that she doesn't have it. It just means that they are going to run more tests on the sample. So, back to our second home we go. 

The lab is going to do testing on the sample to determine if it is leukemia, and we have an appointment for Wednesday afternoon to discuss the results. Meanwhile that means more waiting for us, argh! Tessa is doing pretty well (with the exception of the multitude of puncture wounds). She is in pain from the procedure, but she was walking a little today. She's sporting two new bandages until tomorrow, and we're hoping the pain in her hips will disappear quickly. 

Gonna try to get some rest and do something fun tomorrow before our return to the hospital on Wednesday. Thanks to all of you for your thoughts and prayers, it makes the journey more bearable. 

A special thank you to Zoe, Colby, Kendall, Sarah, Gabriel and Lindsay for Tessa's balloons! She was thrilled to get her first special delivery!!!

Birthday Weekend

First, let me start by saying thank you to everyone for their texts, phone calls and emails. I'm sorry for not taking phone calls, but frankly I don't think I can talk about what is going on in person over and over again. Working on staying strong for my girl, and so far haven't fallen apart. That being said, it has really bolstered my spirits knowing that there are so many of you out there praying and thinking about us. 

It has been a really great weekend overall thanks to our wonderful family. Saturday Tessa was in a ton of pain and was taking Oxycodone every four hours; not really moving, and feeling pretty awful. However, our personal angels Auntie Katie, and her cousins Sam and Elle came over. Katie brought her kitchen and set up on the floor and made chocolate cupcakes with pink frosting with Tessa. Sam and Elle spent hours playing with Tessa, entertaining her and making sure she was drinking enough. Pretty sure there are some beautiful white wings hiding under those girls' shirts. With her cousins' tender ministrations Tessa's day was so much more enjoyable, and it was wonderful to see her smile.

(From left: Samantha, Elle, Tessa, Mommy, Noni, Auntie Katie)

Today (Sunday) Tessa woke up feeling really good. She hasn't taken any pain meds in 28 hours and she was in wonderful spirits (I'm pretty sure that it was spending the previous day with her cousins that was such good medicine). We celebrated her birthday today with Aunie Katie, Uncle Marc, Sam and Elle, Auntie Julie, Haley and Alyssa, and Rob and his sweet girls Chloe and Callie.  Tessa had more attention than she knew what to do with. 

Cupcakes!

(Haley, Samantha, Tessa, Callie)

Tomorrow is the big day. We'll be heading back to the hospital at 11 and Tessa will be getting her biopsy which will determine the course of treatment. I will do my best to keep everyone updated to the results, which we may not get until Tuesday. I am anticipating that Tessa will be admitted to the hospital tomorrow, and we are packing our bags in preparation for a long stay.

Pray extra hard for her tomorrow. 

Tessa had a great 4th of July with her Noni and Papa, Deedee, Uncle Mike, and her cousins Kelly, Dylan and (honorary) David. She particularly loved the fireworks show that Dylan put on for her, and was asking for more the next day. She is an amazing and resilient little girl who lights up our lives.

So...down to business. Tessa spent all day Thursday at Stanford Children's Hospital with Casey and I. Her Nana and Poppie came up from Carmel and spent the day with us there, which was wonderful for all of us. She was seen by a Pediatric Orthopedist who had us repeat all her tests...x-rays, bloodwork, and MRI, for which she was sedated. Definately, walking away from our unconscious baby girl before she was wheeled into the MRI has been the hardest thing for me yet. We went back to the hospital this morning to review all the results with a doctor. He talked with us, and told us that he felt really confident that it wasn't a bone infection and sent us over to Pediatric Oncology. After more blood work (and waiting) we met with a wonderful doctor there who finally gave Tessa some better pain medication and counseled us that she felt pretty confident that Tessa has leukemia.

The next step is that she will be getting a bone marrow biopsy to either confirm (or not) the diagnosis on Monday. From there we will know more about what comes next. We can expect some pretty intense treatment if it is in fact leukemia, possibly spending upward of several weeks in the hospital.

We are all so grateful for your support and prayers. Keep em coming!

By the way, her birthday is Monday, so send her birthday wishes too...

For those of you who are just tuning in we are at the beginning of madness. Tessa started complaining of her knee hurting on Wednesday. After a very rough night I took her to the doctor the next day and was sent home with a prescription of rest, ice and ibuprofin. If she didn't feel better in 5 days, check back in. However, after another rough night Casey and I decided that there was something more serious than just a sore knee and called to request an x-ray. We got an x-ray that morning and it showed some patches that didn't look "normal" to the doctor. So he sent us to get blood work. That afternoon Tessa had her blood drawn, luckily Casey was there to help me. Not the most pleasant day for my baby girl.

Yesterday, Monday, we went back to the doctor to discuss the results. They were concerned and sent us for an MRI, which we got today. Another extremely unpleasant experience for the birthday girl. The MRI showed that there is some infiltration into the bone and that she needs to see an oncologist. We are starting the process tomorrow by heading up to the Bay Area to stay with Casey's parents. Thursday morning we have an appointment with a Pediatric Orthopedist at Stanford. From there we will probably get a referral to an oncologist. At this point the top three things that they are looking for (though the list is not limited to these) are infection, metabolic processes or cancer. We are obviously hoping this is just an infection and a lot of wasted time.

Please keep us in your prayers as we head into the next couple of days.

Thanks for all of your love and support!