New Years Eve- Day -11

Well, we made it! We got to the hospital at 7 this morning (not terribly bright, but very early). Tessa was fortunate to get the first slot for her central line placement, that meant that she didn't have to fast all day. Small victories. The line placement is a surgical procedure so there lots of people involved (including one very uppity nurse who almost got her butt handed to her). She came out of it okay, but you can see where there was a first attempt that has bled slowly over the day. So she has her line and this bloody ooze under this big clear bandage (tegaderm) on her chest. Nice. Because of the Indomethacin she was taking her platelets don't work properly so she is at a higher risk of bleeding. She's also been put on a heparin drip which is a preventative medication for a side effect of transplant called veno-occlusive disease. The heparin further inhibits her clotting ability, so she will be at even higher risk of bleeding. I asked the doctor where she would be bleeding from. He explained that bleeding was most likely to occur in the intestine, which is prone to irritation, or from microscopic holes in her skin. Um, what?

Anyway, she's also been taken off pretty much all her meds. Made a switch from prednisone (steroid) to hydrocortisone (about 40% of the previous dose, pretty drastic reduction), hoping the bone pain doesn't come roaring down the pike.

On the bright side her room is decorated in a manner worthy of a princess...pink canopy over the bed, princess decals, glow in the dark stars. It's pretty fabulous! We have our own tv and bathroom. Unfortunately the nurse just informed us that the bathroom is for Tessa only. We have to use the bathroom in the community kitchen. We are also not allowed to use the bath or shower unless housekeeping cleans it immediately after, so we'll have to let them know ahead of time when we want to bath or find someplace else. Uhhhhh... You know I live here now right?

Well, hope you are all out celebrating the coming of the New Year in style. Tessa and I are celebrating with a few episodes of Arthur and hospital bedding. Poor Casey is celebrating all alone at his parent's house where the heat has been off all day. Poor guy.

Happy New Year!

Tis' the Season...

Well, it's official! Tessa has a bone marrow donor, and we'll be checking in to the hospital at the end of the month, either the 30th or 31st. She'll get a central line placed in her chest and start chemo pretty much right away. After 4ish days of intense chemo she'll get a break for a couple of days and then her transplant (also known as her re-birthday in the bone marrow world) will be on the 9th or 10th. The transplant itself is easy, just a blood transfusion. It's what comes after that can be hairy.

In preparation for the big day Tessa is having to get a ton of baseline testing so that they can track any effects that the chemo may have on her. In the last week she has had her first dentist appointment, a trip to the audiologist, repeat xrays, half her body's supply of blood drawn, and a 2 1/2 hour intelligence test with a psychologist today. We have the weekend to rest here in Los Altos at the fabulous Noni and Papa's. Monday she's having another bone marrow aspiration and Tuesday a CT. She has to be sedated for both of those, so that's going to be a rough couple of days. Wednesday we sign the consent forms with the bone marrow transplant team and hit the road for a final week at home.

All that aside we have been very grateful for having had so much time at home this last month. Everyday has mostly been about making Tessa smile. She met Santa for the first time, and got to ride the merry-go-round over and over!

She loves spending time with her family more than anything in the world. As a matter of fact, the only 2 things she can think of to ask Santa for is a pink Christmas dress and a picture of her "whole family". She has had a blast hanging out with her grandparents, aunties and uncles, and of course her beloved cousins!

Tessa is feeling mostly good. No big issues. Some tummy pain that requires morphine and tylenol (she is currently taking 9 medications). Grumpy moods (thank you steroids). But mostly lots of insomnia. Thankfully she's taking naps again, cuz mama needs her sleep!

(here I actually passed out on the couch while watching Casey and Tessa playing!)

On a more thoughtful note, I have become quietly accepting about what is happening. This time at home has been a calm before the storm, and I have managed to reach a place of peace. Of course if you ask me how I'm doing in another week, I may have a very different response. To preface anything that I might go on to say here, cancer is not a gift or a blessing. Anyone who says so is crazy or just plain stupid. That being said, I have had time to reflect on many things lately. I am so grateful for my husband who, though he drives me crazy at times (as those we love always do), is an amazing man. He is such a source of joy for Tessa that I find myself grinning foolishly at them when they are together. He is also incredibly generous and supportive. Working his tail off to keep everything running smoothly on all fronts of our lives. 

I am graced with having the most amazing family, this includes both Stamatergasts and Roos'. The way both mine and Casey's family have supported us has saved our lives and sanity. The generosity, joyfulness and love that pours from these people takes my breath away. 

The community of friends and friends of friends that has stepped up to help us carry this astounds me. I have never known such acts of selflessness. Everything from the gifts for Tessa to girls' nights out have helped me to get here without self-combusting. 

And Tessa. She is my world now more than ever. We spend virtually every waking moment together, and I love it. There was a time when the stay at home and have no life outside of your child schtick was getting really old. But with the future so uncertain every moment has become precious. She is my joy. I have asked myself the question, "would I do it all over again?" At first the idea gave me pause, but I quickly came to realize that it was because I didn't know if I could be so selfish. Would I put Tessa through all of this again? I don't know. Would I walk this road again? In a heartbeat. Being her mother, sharing her life has been the most fulfilling experience I have ever had. 

I hope you all have an opportunity this holiday season to be surrounded by people that you love. Don't miss the chance to tell them how much they have meant to you. Merry Christmas!!!

People

I will admit that growing up and well into my 20's I was a fearful and angry soul; mistrustful of people and their motives. Given that fact, the way that people have stepped forward to show support and love for our family has been shocking for me. I am continually stunned at how people reach out, rally together and go out of their way to show us kindness.

There have been so many instances of generosity that to try and list them here would inevitably result in my forgetting someone. However, this most recent act of generosity stunned me in the organization and pulling together of women in my community that it must have taken. The other day an amazing mother named Lindsay texted me and asked if she could bring over the "25 Days of Christmas" for Tessa. I didn't know what this meant, and kind of had this image of one of those advent calendars from Trader Joe's, you know...the ones with a door for each day of December leading to Christmas with a little chocolate behind each one. So when she and my good friend Colby rang the door last night and walked in bearing two big baskets filled with gifts I was flabbergasted! Thank you to the women who have shown such kindness to my little girl. Her face when she saw those gifts was priceless!

On another note, we had a really nice Thanksgiving here at home. My mom, dad, brother, sister and Auntie Julie (another incredibly generous being) and Uncle John came to celebrate with us. Everyone pulled together to make the day really low key and enjoyable. Tessa had a really good time spending the days with her Nana and Poppy and her Auntie Jenny and Uncle Mattie.

She's been in good spirits. Christmas is in full swing in our house and we are enjoying the crafts/activities that go along with the holiday.

We hit a wall with the weaning of the steroids and the pain returned leaving Tessa unable to walk for a couple of days. We went back up and she's back on her feet. We have almost weaned completely off of the methadone, which is great. Her tummy pain seems to be flaring back up, not sure why. We are headed back up to Los Altos this afternoon. We have appointments for x-rays, labs and a meeting with the transplant team tomorrow. We'll spend the weekend with family and get to make gingerbread houses with the cousins on Sunday. Back into the doctor on Monday for some appointments and then hopefully returning that afternoon.

Hope everyone had a great Thanksgiving. We have much to be grateful for!

Update

I realize that it's been a long time since I last updated the blog and that there are many of you out there who are wondering what is going on with Tessa. She has been feeling pretty well lately, and we've been fortunate enough to be able to be home for most of the last three weeks. We have had our weekly appointments up at Stanford, but have been motivated enough to try and make the trip up and back in a day.

The current situation is this... Tessa is on a plethora of medications. We are slowly weaning her off the methadone, but it is a long process to avoid major withdrawal. We have been working with the docs to figure out how to get Tessa off the Prednisone. There are lots of nasty side effects to long term use of steroids, and it is not something she should be taking much of going into a transplant (more on that in a minute). So, we are attempting to reduce the amount of steroids she's taking, but very slowly because there will be a point at which the pain comes back if we reduce the dose too much. In an effort to circumvent this we have increased her dose of Indomethacin (an anti-inflammatory) to three times a day, and she has started a chemo drug called 6MP. My pharmaceutical skills are increasing exponentially.

The other piece is the transplant. We met with the transplant team last week. It was a pretty intense meeting, all about the risks of the procedure and the process. Not uplifting. Our beloved Dr. Krysta has asked us to talk to the transplant team at UCSF as well. When Casey asked why she told us that "If she doesn't make it, I want you to feel like you made an informed decision." Wow. When I asked what would happen if Tessa didn't get the transplant Krysta said, "She will die".

So, here we are. The process of getting everything ready for transplant will take 6-8 weeks. Merry Christmas Tessa.

I want to thank all of our friends for their support. Colby, Star, Maren, Sarah, and Corrin-Thank you for the food and cleaning!!!!! Paul and Deb, thank you for your generous gift, the book is awesome! Thank you to Jennifer Hinson for continuing to send all those little gifts you send to Tessa. They have come in so handy as pick-me-ups after doctor visits. Thank you to everyone for the thoughts and support you all give us.

On a positive note, Tessa has had a great time playing her friends and celebrating Halloween!

Make the babies talk

For those of you who know Tessa well you know that she loves babies. I thought when that it would just be a phase when her obsession with babies started around a year and a half ago. But now I know better. We must own well over 30 babies, and she loves nothing more than to have you make her babies "talk". She calls them her little sisters, and she plays the big sister. When you ask her what she wants to be when she grows up she always answers, without hesitation, that she wants to be a big sister. And so I've always known that she was going to be a mommy some day. A very loving and nurturing mommy. Which made today's news all the more shattering.

Today Casey and I both got tested to see if we would be a match for a bone marrow transplant for Tessa. It is an almost non existent chance, but there it is. Tessa got her labs done also, and her white blood count is at 31, which is great. However, her hemoglobin is down to 6.4 again so we'll be going in for another blood transfusion tomorrow. I remember when getting a blood transfusion was something to be concerned about. Now it's just another trick in our ever growing bag.

When we met with our doctor the conversation focused mostly on the fact that a bone marrow transplant is the most likely treatment plan. We will be meeting with the transplant team in a couple of weeks to talk about the risks and process. My sister in law Katie had asked if they could harvest and freeze some of her eggs, which I hadn't even thought of. So I asked, thinking only that it would be a good idea because they might be affected by chemo. The doctor said they don't have the technology to do that on children. As the conversation continued we learned that if Tessa undergoes radiation she will become sterile, and there is a good chance that the huge dose of chemo that will be required as part of the transplant preparation may leave her unable to bear children as well. I feel as though someone has taken the air from my lungs and I can't seem to get my breath.

Our poor baby. Even if she survives this ordeal, her battle will continue her whole life. Casey and I are just hanging on right now. We are looking for a way to stay uplifted for our little girl, whose battle is about to become so much harder. Please keep praying, we need a miracle.

Are we having fun yet?

No new news medically speaking. We packed a bag and headed to Carmel to see my folks for a couple days as our next doctor's appointment isn't until Monday. Friday Tessa was a little out of sorts, but we decided to take her to the Monterey Bay Aquarium and play it by ear. It wasn't too terribly successful, Tessa was super hungry a la steroids most of the time, and was pretty grumpy. But she did get a kick out of the jellyfish and the shark exhibit. That evening I went out to visit with some old friends. It was wonderful hanging out and reconnecting with a very important woman in my life (love you Meena!), her husband Paul (dad extraordinaire) and their adorable daughter Jenna. When I got home that night (or rather early morning), I was met with Tessa and Casey wide awake. Tessa's pain had returned in the wake of the lower steroid dose, and she was whimpering in pain. It was a very rough night and morning involving a lot of morphine and comforting from Casey and myself (carrying her to the bathroom, fetching her every need, etc.). After talking with the doctor we hammered her with her original steroid dose all at once and added Tylenol to the mix (which increases the efficacy of the morphine). We managed to get the worst of the pain under control by this afternoon, but she's wiped out (as are we) and already in bed.

We're headed back to Los Altos tomorrow, and back to the doctor on Monday. Praying for some relief for Tessa, and some answers and direction. Love to all.

Here We Go

So Tessa had her biopsy on Friday, and she did a great job as usual. The doctors couldn't get any bone marrow out of her again because of the denseness of her bones, so we had to wait until today to get any information about what they found. We went in today for more labs and to meet with the doctor.

Over the weekend we weaned Tessa off of the steroids to see what would happen with her white blood cell levels. Her labs today showed that they went from 81,400 (an insanely high number) down to the 50,000s. Still really, really high but evidence enough that it was the steroids that were driving her numbers up. So she in now going to be taking half of what she was taking before in order to keep her numbers from going up too high, but also trying to keep the pain from returning.

The steroids have done several things at this point. They have taken away her bone pain, which is a huge relief. They have also brought her white cells out of places where they were hiding before. What this means is that when they look at her blood now they are seeing things that they couldn't before. It isn't a pretty picture.

What they are seeing (but not confirming or able to diagnose yet) is that there are this is probably primarily a bone marrow disease. There were 3 possibilities that Krysta (our doc) threw out. Myeloproliferative neoplasm, myelodysplastic syndrome, or JMML (Juvenile myelomonocytic leukemia). They are all extremely rare, and they all have very bad outcomes. The plan, if she is diagnosed with any of these, is that she would undergo chemo and radiation and then receive a bone marrow transplant. Even if she gets all this her survival rate would still be very low.

As you can imagine Casey and I are reeling. At this point we do not have a diagnosis, so nothing is set in stone. But it doesn't look good. We have some serious doctor appointments coming up. We will probably be staying in Los Altos for the forseeable future.  Keep us in your thoughts and prayers.

And down again...

Tessa had an MRI of her small intestine last Saturday, and of course they did not see anything. Sigh. I still can't decide if it's good news or bad news when they come back with nothing. But that's already old news.

Today we drove back up to Stanford and spent another day at the hospital. Tessa got some repeat x-rays to check on the progress in her bones. It doesn't appear that they are getting better or really worse. She also had labs drawn. We were primarily looking for her hemoglobin levels, as last week it seemed they had dropped way down. We were expecting that Tessa was going to need another transfusion this weekend. Instead her hemoglobin levels came back a little higher than last week, but still lower than the week before so we're not in the red. Instead what was found was astronomical white blood cell levels.

An increase in the white blood cells is expected when taking steroids. A normal white blood cell count is between 4500 and 10,000. You can expect a count in the 20,000s when you add steroids to the picture. Tessa's count came back at 76,000. The doctor is very concerned and has ordered another bone marrow aspiration and biopsy for tomorrow. They are looking for leukemia again.

Every time you think you have begun to accept the way things are, they change again. I had finally established a routine and began believing I could live day to day and create a life for Tessa. And then it all falls apart again. The rage is visceral. It is like a snake in my belly weaving an intangible web. My impotence leaves me weak, and I just want to scream at someone. I look at the swollen face and body of my baby and my heart breaks again. Every time someone tells me how good she looks I want to shake them and yell "Her skin in stretched tight over her bloated body because of the horrible medications she has to take!!!" How can you move through the stages of grief when new things keep happening to fling you right back to the beginning?

My poor baby. I don't even know what to pray for anymore.

MRI Prep

Tessa and I stayed home yesterday and kept the couch company. She woke up a little congested and the pain in her tummy seemed more intense. We decided to camp out and take a rest day. A little morphine later we were in pretty good shape.

I have been fighting back the anxiety of what was going to happen during the placement of the NJ tube. This tube is very thin (think strand of spaghetti) and is generally used as a feeding tube. It is threaded up the nose, down the throat, through the stomach to the jejunum (the small bowel). Tessa was to be awake for this procedure and I was having nightmares about restrains and screaming. But she is such an incredible kid. She lay on a table with Casey and I at her head holding her hands, there was a nurse at her feet, the doctor at her side and a huge fluoroscopy machine over her to help the doctor guide the tube. She was terrified but incredible. The doctor threaded the tube into her nose, but Tessa held so still that we were there more for comfort than restraint. It took about 15 minutes, during which time Tessa cried and the doctor threaded this looooooong tube down into her, pulling a little out, pushing it back in over and over to get it right. It was bad, but not as horrible as I thought it was going to be.

So we are now safely ensconced at Noni and Papa's house keeping a different couch company. I am so relieved that it's over and that the tube is not bothering her too much. We are headed in for the MRI tomorrow morning, and depending on how she feels after she wakes up we may head home directly.

It is so easy to get lost in what is happening to Tessa. Our world has narrowed drastically, and I have forgotten that we are not the only ones who are suffering. When you mention us in your prayers please add one for our dear friend Edna Tobias. She is on of Casey's closest friends' mom. She is battling with lung cancer. Though I have never had the pleasure of meeting her, Casey talks about her with such affection and respect. Keep Edna and her family in your hearts as they move through their own dark hour.

Thank you to everyone for their love and support. A special shout out to Sandy and Don Woolley who are amazing friends and neighbors for keeping our home and chickens safe, and for their constant support.

Leave of Absence

No matter where you go, there you are. I am practicing the art of acceptance (though I'm still at the apprentice stage). At this point in time Tessa's bone pain is being controlled with a cocktail of methadone, indomethacine, and prednisone. Her inflammation rates have dropped tremendously as a result of the steroid, and for that we are grateful. She moves well, though she is not inclined to run and jump. At the forefront on her symptoms is her tummy pain, which is constant and inexplicable. Her biopsies from her upper and lower GI procedures came back normal, which is of course great except for the fact that it doesn't provide any answers. She was put on a new medication last week, cyproheptadine, which is for unexplained stomach pain but takes several weeks to begin working. With the exception of our weekly trips up to Stanford we have been home for a week and a half. Tessa has become a bit of a barnacle in that she follows me even if I move just a few feet away. However, I find that I don't mind the way that my life is consumed by her. If my presents gives her a sense of security I will super-glue her to my chest and move on. The steroids have left her ravenous. The little girl that I would bribe to eat a few bites with a song and dance has been replaced by a child who wants to eat every moment of the day. My new challenge is how to moderate her food intake while not having her feel restricted. I feel like we have covered most ends of the spectrum with this parenting experience. The prednisone has also left her puffy and swollen, though I find myself torn between anger at drug side effects and wanting to suck on her sweet little cheeks.

Casey and I have decided that with all that Tessa has been through, the after-effects of the trauma and the incredibly high level of anxiety that she is feeling, it would not be fair to drop her off at a preschool and wave goodbye. I am working on playdates and going to check out some Mommy and Me type classes where she will have the social interactions and opportunities, but where I can still be available for support. So at present my challenge is creating routines so she can learn to feel safe again, be available to her when she needs me (i.e. at all times), and nutritional regulation.

We are headed back to Stanford on Friday. The plan, as of this late hour, is that she will be admitted to the hospital overnight on Friday. On Saturday they will be performing a specialized MRI on her small intestine where they will actually we able to view the movement of the intestine. The procedure is tricky because she has to be sedated, but she also has to have this oral contrast. Anesthesiologists do not want you to have ANYTHING in your tummy to reduce the risk of aspiration. As of yet, my understanding is that there will be tubes down her nose, among other unpleasantness. I'm honestly trying not to think about it as every time I picture overnights in the hospital my stomach bottoms out and I am filled with dread. I can only imagine how she will react when the time comes to tell her we'll be spending the night. Sigh.

Thank you all for the ongoing support. It is a challenging balancing act trying to establish normalcy while dealing with all of this. Perhaps the hardest part as of late came last Friday in our meeting with the doctors. They told us that in all likely-hood there will not be a diagnosis. Rather this will be a very, very long process in which we will be going to Stanford for weekly visits; assessing her symptoms and responding appropriately. Until that moment I had been operating in a world where we were looking for a diagnosis. This was all temporary, and that eventually we would be able to start treatment. That looks heart wrenchingly remote right now. This is life. We must learn how to live this way and create a world where she can find joy. Even if she's in pain. Even if she is no longer the bubbly girl I once knew. Gratefully these changes in her have not shifted a thing in my heart. If anything I love her more. She is my champion. I have never met anyone in my life who has had to undergo such pain and fear. If I have to spend the rest of my life fighting for her I will.

Please continue to keep us in your thoughts and prayers.

Up We Go

In case you hadn't noticed yet, everything can change on a dime. Yesterday it felt like someone had shopvac-ed the joy out of me through my chest. Today I feel so thrilled because we arrived back in SLO a few hours ago. We will only be here til early next week, but Tessa and I haven't been home in over a month and it is GOOD TO BE BACK!

We went into the doctor this morning, and while there were no diagnostic miracles there was some new information. Her blood tests show that her hemoglobin levels are staying strong, which is great. However, she has high vitamin D levels. There are two different kinds of vitamin D, the kind you ingest and the kind your body produces. Her body appears to be overproducing this vitamin D which can mean a couple of things: a malignancy or some weird variant on an inflammatory disease. Great. We will be going back up to Stanford early next week for a specialized MRI that can actually scan motion. They'll look at her small intestine to see if they can find anything there.

So...living the dream ladies and gentelmen!

Hold On

I feel like I'm slipping away from myself. Gravity has become null and whatever it was that had tethered me to reality is disintegrating. I'm watching our lives through a film of disbelief and agony that I can't quite wipe clean. Tessa had responded so well to the steroids. She was running around and smiling, laughing and alive! Then two nights ago her toe started to hurt again. Casey and I tried to brush it off, saying it didn't mean anything, but fear blossomed deep in my heart. The next night she needed morphine again for the first time in over a week. And then last night we all sat up for hours holding her as she cried. The pain in back in her knees and toes. As I look at her eyes, glazed over from the morphine, I want to scream and weep. It feels as though the delicate fabric of hope that we had begun to piece together with each day that she was able to run and smile has been torn from beneath us. My spirit is in tatters. How long can a person endure so much? Watching the tears roll down my baby's cheeks, the cries that go on so long they begin to crowd out anything else in your head, each one searing it's way across your brain. You endure it as long as you have to. My girl. My beautiful tortured girl. Someone please save her.

Play me

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!!!

Happy Anniversary

I'm lying here on my fold out cot thinking about what tomorrow represents. It is the two month anniversary of the morning Tessa woke with her first knee pain. It also marks the beginning of a second week here in the hospital. These are not dates I wish to mark on my calendar or celebrate, but they lurk significantly in the corners of my mind. I haven't left the hospital grounds in seven days, and there are times when I forget there is even a sun shining out there. But I am grateful to the nurses and doctors who are here for us. The nurses in particular are our angels, and I have a respect for the women in this profession that I never could have fathomed without this experience.

Tomorrow will also mark the fifth day in a row that Tessa will have to fast in hopes of getting either a CT or an MRI. There is an overwhelming amount of construction being done on the children's hospital, and a month ago their MRI room was flooded. Now they have to share the two machines that the general hospital uses, and with previously scheduled patients and emergency procedures it has been virtually impossible to get in. They decided yesterday to scrap the MRI and try to get her a CT instead, but the theme of this perfect storm continued. The CT broke down and the technician couldn't be here until 5, at which point the anesthesiologist would be gone. So another day with no scan. Meanwhile Tessa can't eat or drink just in case they can fit her in.

These images are important because the team wants to start her on steroids. However they need to be sure that there are no masses (e.g. tumors) in her body as steroids would then effectively derail any possibility of diagnosis. Fortunately the team decided to get her a chest x-ray and abdominal ultrasound today. The ultrasound showed lymph nodes in her tummy in addition to some thickening of her bowel. This has made getting her a scan even more of a priority as these findings have postponed the administration of the steroids. The nurses are as furious and flabbergasted as we are at the unacceptable way Tessa has been put on hold, and quite frankly if she doesn't get her scan tomorrow I'm headed toward Radiology myself with guns blazing. The only reason I haven't done it so far is that it really isn't anyone's fault-there just isn't enough equipment. I already am gearing up for a conversation with Patient Relations come Monday morning.

Beyond this little drama, things are getting worse for Tessa again. The bone pain is returning and the tummy pain is escalating. She needed a couple doses of morphine again today on top of her maintenance medication. I'm not sure when we'll get out of here. Casey is headed back to SLO for a couple of days of work (gotta pay those bills somehow), and Tessa and I will miss him terribly. It is so much lonelier to do this when he is gone.

It's late. The hospital lullaby of crying children, clicking and beeping IV monitors, and the foot traffic of nurses is lulling me to sleep.

Keep the emails and messages coming, they are my only link to the outside world and makes this journey a little less lonely. Thank you to everyone for your love and kindness, it would be so much harder to bear this without each of you.

Hospital Sweet Home

This is day five of being in the hospital, and it's starting to feel like home. The good news is that Tessa woke up on Thursday a new girl. She's smiling and even walking a little

It seems that the methadone has finally kicked in and she's in significantly less pain. I almost cried yesterday when we woke up and she had this huge smile on her face. She is no longer needing the morphine, so she is alert and her old charming self.

On Wednesday afternoon there was a huge meeting with all of the specialties. There were over twenty people present (the hospital social worker told us it was the biggest care conference she had ever been to). It was basically a huge brainstorming session. Everyone weighed in and suggested things they want to test for. The last two days they have drawn the maximum amount of blood allowed and today they will be drawing more than the maximum and then giving her another blood transfusion to fill her back up. She will have one more blood draw tomorrow, and then she will have given enough to satisfy the requirements for all of the tests they want to do. The bone doctors at the conference felt that the presentation didn't look like a metabolic bone disease to them, so it's less likely that we'll be heading to LA at this point. We've been trying to get an MRI for her for the last 3 days, but due to some flooding they are down to a few machines. Tessa has had to fast everyday only to find out that they weren't able to fit her in. So today they are canceling the MRI and sending her in for a CT instead to get the images they need. They will probably start her on a round of steroids tomorrow to see if that will help her feel better. That will run for 3-4 days, and then the hope is that we can go home.

Beyond this we will be waiting for test results; we know so far that she doesn't have HIV. Phew. The doctor told us that if we still don't have any results in two months we'll probably head to NIH in Bethesda, Maryland. The NIH clinic is renown for dealing with hard to diagnose cases. In fact it is the clinic which the show House is based on, and for some reason I find that to be less than comforting.

Anyway...here we are making the most of our new home. At least we have our own TV, internet and room service (even though the food is a few steps down from appetizing). Love to all!

Here and Back Again

We've spent the last week at the ever generous Noni and Papa's house. After being released the day after surgery we resumed our battle with Tessa's pain. The methadone seemed to make little difference, and after talking with several doctors the dose was increased twice. Despite this she still required her maximum dose of oxycodone every two hours, and still she was in pain. It's agony watching someone you love have to suffer so much, and it's only made worse by the fact that she's so small and defenseless. I keep thinking, she hasn't even had time to do anything wrong in her life-she's never hurt anyone or made a bad decision, why does she have to go through this? But that is just one of the multitude of thoughts that make this experience that much worse.

Casey and I spent the week trying to keep her comfortable (and failing miserably): waking every few hours at night to try and stay ahead of the pain, draping her head, tummy and feet with wet cloths that need constant refreshing and ice packs for her arm, hands and knees. Casey went back to SLO on Sunday to get in a couple of days of work (government assistance will only get you so far). On Monday I made several calls to the Pain Clinic to let them know that Tessa was still suffering way too much and to report how much medication she was requiring just to avoid the back arching toe curling pain. Later that afternoon I got a call back from the pain doctor who said that the rate at which her medications were being titrated and the dosages that she was receiving puts her at extremely high risk of overdose and death and that I needed to bring her in to be admitted immediately. So there I was, all alone, racing around packing a bag and trying to get everything we would need, got her into the car and raced over to the hospital all the while checking to make sure she was breathing. One of the more stressful moments of my life.

Tessa and I are now safely ensconced back at the hospital where she seems to be doing relatively well. She has a pretty decent cocktail of morphine, methadone, toradol (super-duper ibuprofin), ativan (anti-anxiety), and atarax (for the itching all the narcotics cause). She finally got a good nights sleep last night. Yes, I slept a little but come on people, hospital cots are not the most deluxe accomodations. I'm going to need a four hour massage when this whole thing is done.

We've got doctors from Infectious Diseases, Immunology, Endocrinology and Psychiatry coming in this afternoon to see her. Endocrinology is presenting her case at a conference this afternoon. As for Psych, they are here for support. Tessa has a fair amount of anxiety now because of everything she has had to deal with, and she's starting to look like the PTSD poster child (that might be a slight exaggeration but not by much).

Tomorrow she will be having another MRI and some x-rays. For some reason they like to schedule the MRI's for as late in the afternoon as possible so that she has to fast for like 24 hours on top of everything else. Don't get me started. These are the only times I'm grateful she has such a small appetite. There is going to be a huge round-table discussion about Tessa tomorrow afternoon involving all of the specialties that have seen her to see if they can come up with any new ideas and a plan on how to move forward.

Thank you all for your prayers and support! Jennifer Hinson, you are an angel. Thank you so much for your gift, we are very grateful. Thank you to all of the family who has rallied to make Tessa smile. Thank you to Dee Dee for dinner last night, and an advance thank you to Katie (and Marc), Sam, Elle, Noni, Jennifer and Michelle for bringing us lunch and smiles this afternoon. We love you all!!!

Diagnosis: Part...Oh, forget it

I thought I had it bad when Tessa was just born. Waking every 3-4 hours to nurse her, diaper changes, exhaustion. I had no idea. Woke this morning feeling as though my head was a glazed donut: fluffy, filmy on the outside, and a gaping hole in the middle. We've been waking up every 2-3 hours to administer meds, carry Tessa back an forth from the bathroom (she's been unable to walk for about a week and a half now), wetting the cloths, getting milk, ice packs, etc. I get about 3-4 hours of sleep a night spread out over 8 -9 hours or so. Something you should all know about me is that I like my sleep. I NEED my sleep. Without a solid 8 hours of sleep I turn into Mr. Hyde's creepy sister. Now I feel as though I've managed to keep my composure fairly well, but the sleep debt is mounting and I'm losing my cool. One might even say that I was a bit "bitchy" with the doctors today.

That brings us to the day's adventures. We'll leave out the bit about Tessa's misery as I'm sure we're all well acquainted with what that looks like by now. The fabulous Auntie Katie brought Sam and Elle, and Tessa's new honorary cousin Jennifer over for a visit. Jennifer and her sweet mom got Tessa a totally adorable doll sized pair of flannel pjs and sleeping bag. Thanks ladies! Tessa is so happy that Apple Dumpling Tessa (her baby doll; yes she named her herself) can sleep next to her in bed because she is no longer "pokey" in her new sleeping bag!

I'd also like to add that yesterday Tessa got a visit from a couple of her other fabulous cousins, Haley and Alyssa. Not to mention the fantastic Auntie Julie! I'm told they read to her and made her smile (as they always do). I don't know since, upon their arrival, I announced that I was going down to bed. 

At noon Nana, Poppie and Auntie Jenny showed up and we all caravanned to the hospital. The first thing we did was get a blood draw. It seems as though we can expect that nothing will go smoothly. Blood draws are particularly stressful for Tessa. We apply the lidocain cream to the crooks of her elbow about an hour in advance to numb the area. The pokes are not painful as a result, but she still becomes highly anxious escalating to panic once in the chair. For some reason all of the poor lab technicians feel like they should try to charm her before sticking her in the arm. As a result Tessa is sitting in the chair on Casey's lap shrieking and hyperventilating, the technician is making small talk like "Hi! What's your favorite color?" or "My name is Coco (all names have been changed to protect identities), how are you?" and I'm glaring at them muttering "Can we just do this?" Not pretty. Today the technician, let's call her Fumble, took around ten minutes just locating a vein. When she got the needle in she filled up one syringe (they take a LOT of blood for all the tests they run). Fumble kept messing around with the needle until it freaking fell out! Um, really? I'm holding the poke sight closed and have blood all over my hands and she says, "Oops! I didn't get enough." So she has to go into the other arm. I'm pretty sure I don't need to explain what the sleep deprived creepy Hyde sister wants to do at this point. 

Anyway...

Tessa is fully traumatized at this point and won't let me go. We go into a consultation room to meet with the doctor to get results of the bone biopsy. Every time a nurse or doctor walks in Tessa freaks out. She's exhausted and in pain. She finally falls asleep in my arms. A small while later one of the oncology docs who is filling in for our primary doc (whose been out all week on vacation) comes in to report that at this point there is nothing new from the biopsy. Why am I not surprised. We give her the low down on what has been going on lately, and she becomes concerned when we start talking about some of Tessa's new behaviors (frequently jerking awake in fear, twitching when she sleeps, irritation). We try to impress on her the level of trauma and pain that Tessa has gone through, but she remains unconvinced and brings in a neuro doctor. He does a quick assessment and concludes that her brain is probably fine and that she's been through hell. 

Our day wound down in the Pain Management Center where we met with a wonderful doctor who we met on Monday night. She was the anesthesiologist for Tessa's surgery and stayed to talk with us extensively that night. We requested that she be on our pain team and made the appointment for today. As of tonight Tessa has started taking Methadone. Most of you will know this drug as the one that is used to ween heroin addicts. For our use it is a long acting pain relieving agent. Once the drug is fully in her system (about a day and a half) and we have the right dose she will only need to take it twice a day, as opposed to the short acting Oxycodone every 2-3 hours. We will still be giving her the oxy on an as needed basis, but we are hopeful that this will be greatly reduced. Most exciting is that her pain will be better controlled, she'll be feeling good, and best of all we can all get some sleep! 

Ok, I've rattled on long enough. Get back to real life people, but keep us in your thoughts and prayers!

Third Time's a Charm (We Hope)

Finding a moment to do anything is becoming increasingly difficult. I try to get some sleep when I can, but most of the time Tessa is gripping my hand. She has become more fearful, not wanting me to be farther than wrapping my arms around her. Last night she would jolt awake calling for me; when a nurse or doctor comes into the room she begins to whimper "what are they going to do?", like everything else it's heart breaking.

We were discharged from the hospital on Saturday, and Casey and I decided it was time that we took control of her med schedule. We messed around with it until we found a formula that seemed to keep her pretty comfortable. Saturday night we got to see Auntie Dee Dee, who had her magic book bag with her (love that Dee Dee!), Uncle Mike and Dylan. They brought us a wonderful dinner, and hung out. Later Katie, Marc, Sam and Elle came over much to Tessa's delight. She thinks the sun rises and sets with all of her cousins (I kinda agree).

On Monday we were supposed to get a bone biopsy. All that we knew was that we were going to be squeezed in at some point that day-probably later than earlier. Casey spent all Monday morning and early afternoon on the phone trying to find out when we were supposed to be there. The biggest hitch was that Tessa had to fast from the previous night-no food and only occasional sips of water. The fabulous Sam, Elle and their friend Jennifer (who Tessa is still talking about) entertained her for most of the day, for which we are so grateful. They finally called us in at 3:30. We got to the hospital at around 4 where we waited until 6. They finally brought us back to get Tessa prepped. Sadly, the premed that they give to kids before the sedation (to make it easier and less traumatic when they are laying on the bed with the gas mask on) no longer works for Tessa thanks to the huge amount of opioids that she takes on a daily basis. So we wheeled her back to the OR where we have to restrain her while they hold the gas to her face. Then they tell you to give her a kiss goodbye. Why do they do that?

This biopsy was different than the previous procedures which were aspirations-poking a big needle through the bone and trying to suck stuff out. This one was an actual surgical procedure. They made an incision in her left femur, cut out a piece of bone and scooped out as much marrow as they could; think melon baller. When we got to the recovery room it was 8 and she was waking up with doctors and nurses scrambling around her. We were pissed because we had always been there with her before when she woke up and we had been very clear that this was something that we were adamant about. She was crying and screaming from the pain, and they loaded her up with dilaudid and fentanol. She was still miserable a half an hour later and she got a big dose of oxycodone. She was finally able to calm down and fall asleep, but she would stop breathing and had to have the oxygen on blow-by. They didn't feel comfortable releasing her, and at about midnight she was admitted for the night. So Tessa and I had another night in the hospital.

We're back at Noni and Papa's house now, she's hurting badly and getting loaded on pain meds. We are just trying to keep her comfortable. Life is lived minute by minute, dose by dose.

We're hopeful that we will have some information from the biopsy sometime in the next couple of days and that it will yield something informative if not conclusive.

Thank you all for your prayers and support.

Shaken, rattled and rolled

Is it possible to live a lifetime in a day? Of course it is. After today I'd be tempted to say you can live a lifetime in 8 minutes. That's how long you have to wait until you can hit the morphine delivery button to get another dose. I wouldn't have believed that the hands on a clock could actually stop until today. Last night was another experiment in torture. Though everyone here at Lucille Packard Children's Hospital (LPCH) is as kind as the day is long, Casey and I have removed to rose colored glasses. Tessa slept soundly last night until 2:30 when she woke up in agony. Over the next couple of hours I did my best to get her any relief. The doctors were slow to increase her dosage, but I came out swinging. Still, it wasn't enough. The nurses wanted her hooked up to all kinds of wires to monitor her after the dosage increase, but she was already in so much pain it was just kicking a downed dog. I told them she needed more, but they were slow to respond. Finally she passed out at 6 this morning and we both managed a few more hours of sleep. Once again she woke to the cruel bedfellow that has become all to familiar to her in the last month and a half. Again, it was like drawing teeth to get the doctors to move in the right direction. She suffered all morning and afternoon. They told us that likely she was stressed, and wanted to giver her Ativan, an anti-anxiety drug. We balked saying that she was stressed because she's in PAIN! But after the team talked it up we decided to give it a try. Between the ativan and the dilauded she became totally out of it. She was exhausted but couldn't sleep, her eyes rolling back in her head only to snap back time after time. We tried to take her to the play room, but five minutes after arriving she threw up the only thing she had eaten all day.

When we got back to the room we said we wanted to talk to the Pain Team. When they got there I unloaded telling them that she had been in less pain when we had her at home. I told them that since we had gotten here she had suffered more, experienced more discomfort and nausea than at any previous point. They decided to overhaul the plan and put her back on the oxycodone and tylenol at a much higher dose.

She is finally asleep, and I'm hoping that we are both going to get some rest. She is scheduled for another bone marrow biopsy for Monday, this one in her femur. After that she is going to be put on tetracycline (an antibiotic) for a couple of weeks as part of preparations for a very specialized type of bone biopsy that will be performed in LA. We are hoping and praying that we get the pain under control quickly so we can take her back to Casey's parent's house tomorrow and avoid any more time in the hospital.

I'd like to say thank you to everyone for the gifts that you have given to Tessa and our family. I have made no attempt at thank you cards, and I hope that you can all forgive me. Linda and family: thank you so much for the Dora care package, Tessa hasn't been without the blanket since she got it!; Kristin and family: thank you for the butterfly observation kit-we can't wait til we can get it going; Ruda: thank you for the coloring books and sticker set; Jennifer and Co.: you guys are amazing, Tessa opened your care package today-great stuff for hospital bound girl!; Kristy: thank you for dinner and your amazing reading skills, it was such a relief to see her smile and engaged!; Katie, Marc, Sam and Elle: thank you for dinner and your ongoing love and support, your girls are magic. If I have forgotten anyone I hope you can forgive me. If I'm not returning texts or answering calls, be patient. I love hearing from you all, but at times I fear that if I open my mouth I'll start crying and never stop.

Pray for our girl, she is in the dark night of the soul.

Pain

When we arrived in the Bay Area on Sunday Tessa was starting to feel pretty good (relatively speaking). She had a few good days, running around at the park and only low grade pain. I even took her to the San Jose Children's Discovery Museum where we met Nana and Poppie. She played all day, running around and having a blast! 

That night she was assaulted by pain of the same magnitude that sent us to the hospital a week and a half ago. After four hours of unbelievable torment she finally fell asleep only to wake up screaming and crying again this morning. We brought her to Standford where they admitted her, and from where I now sit in a dark room on another hospital cot writing to you. Our time here is with the primary goal of managing her pain and figuring out how we can manage it at home. To this end we are working with the Pain Team. Yes, there is actually a Pain Team, and no they don't dress like super villains. She is currently on a cocktail which has kept her from the worst of the suffering and includes dilaudid, a derivative of morphine. 

Stepping back to look at the bigger picture is far more frustrating. She was seen by Rhuematology and Hemotology, which can be added to a growing list that now includes Endocrinology, Oncology, Orthopedics, Pathology, and others that my exhausted brain can't recall at this late hour. The Hemotologist whom we saw today has been working in the field longer than I've been tromping on this earth, and seems to be a wise old soul. He told us today that whatever it is she has is pretty rare. This is no big surprise given the brains that have looked at her, and the number of people across the country who are drawing a blank, but it still makes my heart lurch. 

Today I have embarked on the anger stage. I'm pissed that my poor, beautiful girl must suffer so much before she has lived long enough to get her kicks. I'm pissed that no one knows anything about why her bones are so thick, why they are dying in places, why she is in so much pain, or any of her other symptoms. It was bad enough that there was something wrong, but now it's something that some of the top brains in the world may have never seen before. I'm pissed that I can't take it for her.

Torment

I feel like we're living on an island. I have been overwhelmed by the kindness of people, and in some ways I feel more connected and supported than ever before. But despite this, our lives have become so different that it seems that real life is going on out there, ebbing and flowing, moving swiftly around the bubble in which we live, but not touching us. I spend my days watching for the fingers of pain to infiltrate the beautiful, delicate body of my baby. Trying to beat it back with a barrage of medicines. In the fleeting moments when she isn't hurting I try to squeeze in a moment of fun, trying to remind us all that she is still a child and that her life is supposed to be carefree and filled with joy.

But the nights are the worst. Tessa sleeps with us, carefully sandwiched between Casey and I. This way we will always be there when she wakes at night and we can more adequately watch her. Last night Casey and I watched as she whimpered in her sleep, softly crying out "it hurts". It is torment. Do you wake her and let the pain crash over her so that you can give her the medicine, or let her sleep where the pain is ever present but muted? When the cries became louder we woke her. With every scream your heart breaks open. We give her the medicine, but of course it takes time for it to work. Her toes curl under and her back arches as the pain wracks her body. She is furious about what is happening to her and climbs out of the bed, storming into the hallway. I sit in the hallway, giving her space, and the pain is too much. She crawls back to me to be close. I sit with her there for a half an hour. The whole time she is crying and screaming and beating the floor with her feet, because her arms hurt too much to lift. And I wish I could cry and scream too. When the medicine finally kicks in she is spent and I carry her back to bed. As we lay there, her eyes closing, it begins to rain. It feels as though the heavens are weeping for us, because we have to be strong for our girl. As the lightening flashes across the sky I feel the screams that are bound within me loosen. The tempo of the water on the roof is cathartic, and we all drift off in exhaustion.

Mr. Toad's Wild Ride

I feel so grateful to all of you. Life is made easier by the support and love that we have gotten from everyone. Case in point, my amazing cousin Rachel. Rachel spent all day Sunday, Monday and Tuesday at the hospital with us. She drew picture after picture, made the babies talk, doing hair, making  jewelry and painting nails. She brought just the right combination of support, love and happiness to make the ordeal that much easier. Thank you Auntie Rachel, you are one of the most amazing women I have ever met!

The all-talented Dr. Rachel

Tessa sporting Auntie Rachel's handiwork

Life is moment to moment now. We can't really make plans beyond a couple hours ahead, and even then they often change as the situation changes. On Tuesday morning we were discussing possibly going home, by early afternoon we were sure we'd be spending another night in the hospital and transporting Tessa by ambulance to Stanford the next day. By late afternoon Tessa was feeling so good we took her for a ride in the stroller outside to Santa Rosa Park. She was so happy to be out of the hospital that she walked a little, went on the swings and down the slide over and over!

After this experience we rushed back to the hospital and decided to take her home. We checked out and got out of there. That night was rough, but not horrible. Today was spent dealing with insurance, tracking down prescriptions and managing her pain.

The blood transfusion has brought back color to her cheeks so she no longer looks like a cast-member of the Twilight Saga. She is happy to be at home, and so far we've managed to keep her relatively comfortable. 

The "plan" is to head up to Stanford on Sunday for some more tests, etc. We are looking forward to seeing the Bay Area branch of the family, and Tessa can't wait to see her cousins (so stay healthy girls!). Thank you all for your kindness, we'll keep you posted.

I've gotten some feedback that there are people who are not receiving the blog. A couple of these people I do have on the mailing list, so I can only assume I may have some wrong email addresses. If you want to receive the blog please post your email, or text/email it to me and I'll add you to the list. Thanks!

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!!!