5/22/17

Sorry for keeping you all hanging.

Tessa's bone marrow and bones all look normal! It was such a relief, that the come down off the stress leading up to it fairly left us debilitated. A little PTSD perhaps. She has an appointment to see a rheumatologist next month, but I gotta say that the relief of knowing that she doesn't have cancer (and the amazing news that everything looks good!) makes any other issues seems trifling. Of course, she's still hobbling around for now, but hopefully whatever this is will resolve itself or be easily treated.

Thank you all for the prayers you sent our way. It obviously worked!

xoxo

5/11/17

Well Tessa made it through her bone marrow aspiration today. It was a rough day for all of us. It was very surreal to be walking this path again. The knee pain, the X-rays and MRI, the aspiration. I fell apart a couple of times under the weight of the possible return of her cancer.

Casey and the nurses were so wonderful. The staff at the Bass Center (oncology/stem cell clinic) are incredible. They are unfailingly supportive and kind. Tessa is kind of a rock star there. She has been going there for so long that the long term staff all know her and make a point of searching us out to say hi.

The hardest part by far is the passage into unconsciousness and the return from it. The moment the mask hits her face Tessa's eyes widen and she begins to cry "help me!" over and over. Her eyes start rolling around in her head and she is grabbing at me, trying to hold on to reality. The return is just as hard. The sudden onslaught of pain. The disorientation of being someplace different. Deep breaths.

But there is good news! The preliminary report is that her bone marrow looks healthy. I literally felt the air rush back into my lungs at this pronouncement. Her bones also look really good. So this is all wonderful and relieving. Of course that still leaves us with Tessa's ongoing pain and inability to walk. The pediatric Orthopedic doc came to see her. He was stumped as well, but decided to order an MRI of her femur and hip to determine if there is any sclerosis or necrotic bone there (both issues she had previously). So that is on the table for tomorrow morning. Another IV drip for the contrast and the joy of laying immobile in The Tube. Hopefully this will shed some light on the situation. Otherwise we are back at square one. Again. This seems to be a pattern... Tessa, the zebra in the herd of horses.

Day 179

Four years ago today, Tessa was born. An event that would change our lives in more ways than we could have possibly fathomed. And, yes, this last year has presented us with fear and unforseen challenges that have brought us to our knees. But even throughout the moments when we thought Tessa might die, even when her screams of pain liquified our insides; She. Is. Joy. There is no question.

This birthday is more than a celebration.

Day 118

We've been home for almost 5 weeks now, and in many ways it seems as though we never left. We get to see our friends a couple times a week (with the added interogation of "are you all healthy?", "take off your shoes", "wash your hands", "don't share sippy cups!", etc.). It's wonderful to be able to reconnect with friends and see the kiddos that Tessa has grown up with and how much they've changed over the last six months. Getting Tessa to play with her friends requires some effort on our part, facilitating play and being involved. Casey is wonderful at this and watching him in action is a reminder that though it is hard to have to constantly be present and involved with Tessa, the payoff is worth it. There are moments that cause my stomach to clench, though. The other day we went to a playdate at the park. Tessa had about ten minutes of carefree movement-chasing her friends and riding her bike (which brings me such joy my heart feels it will burst!). But I tend to forget that she's still not in tip top shape. That ten minutes of activity left her feeling nauseated. She crawled into her stroller and could not be convinced to come out. I look up and see two of her friends running with abandon across the field. I mutter "look at them..." to my friend. She says, "What? The girls running?". "Yeah",  I say. I can't tell you how much I want that for Tessa. "Someday," I whisper.

So... normalcy, it turns out is a matter of perspective. We've just had to adjust our filters a little. I think way deep inside I keep hoping that she's going to go back to being the way she was before June 28, 2012. That we would get to go back and relive the last year with our little girl now that she's better. But we don't get that time back. Things don't "return" to normal because life always moves forward and we are just along for the ride. This is the new normal.

The flip side of the hard stuff is the miracle that has happened. Tessa went in for her second post-transplant bone marrow aspiration/biopsy on the 13th. We got back the results later in the week. She remains 100% donor, which is amazing! It means that despite her new marrow only being a 9 out of 10 match, her body is accepting it and it's putting down roots and making itself at home!!!! It's an act of grace that we are making our way out of the darkness and into the light.

5/10/17

I have thought about this blog a lot over the last 4 years, but to be honest I have avoided revisiting it. I always thought I would print it out one day and have it bound as a tangible record that Tessa can revisit when all of these memories have faded to sepia toned shadows in the recesses of our minds. I never thought I would be writing another entry. No, that's not accurate. I refused to acknowledge that that could be a possibility.

But here we are. Lucille Packard Children's Hospital. A place all too familiar to us. But let me catch you up.

At the beginning of April Tessa started complaining of left knee pain. For those of you who have been with us since the beginning, you will know the fear that must have struck in our hearts (It was June 28, 2012 that Tessa shared her left knee was hurting, she very quickly stopped walking on it, and within the week we were at LPCH listening to doctors toss around words like leukemia and myelodysplastic syndrome). It was about 2 weeks ago that her discomfort took us to the doctor. An X-ray and MRI came back normal, and her blood work didn't show anything majorly significant. But Tessa was tottering around on crutches by this point, and consistently complaining about pain. So Stanford said it was time to see her.

We went in to see Tessa's new oncologist, Dr. Krysta, we are very sad to say, has moved on. Up until this point I had convinced myself that she was fine. After all, what could possibly be wrong if all those tests came back normal(ish)? But my heart has been lodged in my throat since the moment Dr. Catherine said it was completely possible to have a normal CBC, and still have something going on in your bone marrow. And then it happened again. I still have the words myelodysplastic syndrome, myeloproliferative disorder, and leukemia ringing in my ears. That is what they will be looking for when Tessa gets a bone marrow aspiration tomorrow morning.

If you are unfamiliar with this procedure, let me explain it in layman terms. Tessa will be sedated and hooked up to an IV. While she is out the doctors will roll her onto her side. They will use a very large needle to force their way into her hip bones in her lower back (think lower back dimple some people have). They will extract bone marrow, and then repeat the procedure on the other side.

I remember in agonizing detail the first time she had this done. It was her 3rd birthday, and she was terrified. I held my lips to her forehead and sang Twinkle, Twinkle Little Star as she breathed in the gas. Walking away from that small, limp, helpless girl is still on the list of top five hardest things I've ever done. It was the first time I fell apart, walking down that sterile hallway with Casey's arms around me.

We've lost track of just how many of these aspirations she has had. Eight?

It is an eerie and sickening sense of deja bu that grips us now. I pray for strength for my daughter, and good news that will release us from this fear.

Day 223

Yesterday was a long day. That morning I got up at 5 and got all of our stuff ready for the trip north, whipped out the blog and took a shower all before Tessa was awake. When she woke up and remembered that we were headed back to the hospital she asked for a laundry basket and to be covered with all the blankets so that she would be safe. Poor kid.

Tessa in her Safe Spot

Tessa and I drove up to the hospital, Casey followed us in a separate car (he gets his weekend away this weekend). As is par for the course when you are at the hospital everything took forever. It was 2.5 hours before they even got the IV in. The IVIG infusion took about 3 hours, and then an extra half hour to fill her up with extra fluids (she was a little dehydrated). Casey was awesome and took Tessa wandering around the halls while I took a (very) short nap. Tessa walked her "kitty" which was made out of the board they were going to strap to her arm to keep it from bending, but her sad little face convinced the nurses not to.

Tessa and daddy walking "kitty"

The good news is that Tessa was not admitted. She even gets to go down on some of her meds! We just have to keep a close eye on her (cuz I'm not constantly hovering over her and watching every move she makes now :/). We left the hospital last night at 7 and Tessa and I drove to my parents house in Carmel. We are both wiped out. I slept until 11:30 today (yes!!!!), and she passed out on the couch this morning and is still dreaming peacefully.

Socked out on  Nana's couch

Thank you all so much for your prayers, they obviously worked and kept us out of the hospital! It means so much to our family that we have such a supportive network of friends and family. We are grateful to you all.

I will try and do a better job of keeping everyone informed of Tessa's adventure! I promise promise (as Tessa would say).

Also want to get the word out about something wonderful that Casey is doing. Being so affected by Tessa's experience, we both want to be able to give back in some way and Casey has found something that is right up his alley. He is participating in a fundraising bike ride called the Canary Challenge to raise money for cancer research. If you are interested in reading a bit about his experience and motivation for participating, or if you would like to make a donation please visit his link here:

http://canary.convio.net/site/TR/Events/General?px=1018531&pg=personal&fr_id=1060

Thanks for taking the time to check this out. If it wasn't for all or the research and work being done in this field, our family would be in a very different place.

Love and prayers to you and your families! 

Day 222

Here's the thing about transplants. There comes a time after you've gone home that you think life will eventually be "normal" again. You've got the medicine down to a science, you only have to go the the hospital every couple of weeks, you've even had a couple of playdates. Everything feels like it's coming together and you're moving past that fear rooted life you'd been living for so long. Then your kid stops eating. The tummy pain comes roaring back. And when you take her temperature and you see she has a fever you can feel your heart land on the soles of your feet.

Things have actually been running pretty smoothly for the last couple of months. No soul chilling issues, labs are good, and the meds have slowly been going down. Tessa's level of activity is still low, and we still have to be super careful about germs and she has to wear a mask indoors (houses are generally ok). But, her swelling has gone WAY down, she's getting hair, and she is smart as a whip! Her favorite game is still Make the Babies Talk (Casey and I have pretty much been completely depleted by this one), favorite color is still dark pink (not light pink, dark pink), though her favorite princess is now Belle (mostly because my Aunt Julie sent her the most incredible Belle gown, which is her primary ensemble these days).

But to stay current and not overwhelm myself trying to catch you up on the last few months... Tessa has had styes in both her eyes that have lasted for about a month and a half. Of course, without an immune system it is difficult to fight anything off but with every blip in her health comes the fear of GVHD (graft versus host disease- her body rejecting her transplant). We have had several trips to the doctor to keep an eye on these babies. Then this last week Tessa stopped eating, her tummy pain flared, and she came down with a fever. We went to the hospital on Monday (we were there from 8:30-3) and got home at 7 that night. She saw her regular transplant doc who informed us that if she hadn't made progress in 48 hrs (eating, solid stool) she would have to be admitted and have a scope to check her GI track for GVHD (this would mean a return to steroids). Tessa also got to visit the eye doc who reported that her styes do not look like GVHD in her eyes (phew!) but that she has developed a cataract in her right eye as a result of prolonged steroid use. Ugh. Yesterday morning (Tuesday) I got a call from the doc saying her IVIG levels (a measure of her immune system) were low and she needed to come in for an infusion today (Wednesday). So we will be back on the road 36 hours after getting home. Good times. The good news is that she actually ate yesterday and seemed to have more energy. Hopefully this will mean that she won't have to be admitted today and that we will be able to leave after infusion. 

Please keep a little space in your hearts for Tessa today as she is evaluated by docs, pray for no GVHD!!! 

Happy girl at her cousin Kelly's wedding

Who's that cutie?

Exhausted girl waiting for her pokes at the hospital

Day 68

Yes, we're still here plugging away in our home away from home. The days both drag by slowly and are gone before I seem to accomplish anything! I find myself feeling a bit like I did when Tessa was 18 months old and all my time and energy was consumed night and day. Doling out and organizing the medicine is a part time job in and of itself. But it's a dichotomous time in my life. I am constantly finding myself simultaneously struggling with the isolation from my own life, and the gratitude I feel that Tessa is doing so well and that I get spend this time with her. It's hard to know how to write this blog with all of these conflicting emotions.

If I'm honest, my heart breaks a hundred times a day. When Tessa's tummy pain wakes her up in the morning, that she still needs so much help with simple things like climbing the stairs, when I see pictures of Tessa from eight months ago and I don't even recognize her, when we go to the park and see all the children running and climbing, when children look at Tessa or even come over to her stroller to look at her because she looks different. At times I do it to myself. Looking at Facebook is one of the worst. I miss my life and my friends, but all those pictures are a killer. Tessa's peers celebrating milestones, my friends moving on with their lives. 

But, as I said, this is just half of the direction that my thoughts take. For every sadness there is a celebration, no matter how small. She is a trooper, with the heart of a lion. She walks up those stairs, slowly and with help, but she never gives up. Despite all her physical changes, she is still beautiful. Perhaps more so now because of all she has endured. Her strength grows very slowly, but yesterday she rode her trike around the park almost entirely by herself, what a triumph! Tessa's life follows a different path than that of her peers, and not only is that ok, but it can be wonderful. Tessa's story has touched so many lives, but it has completely changed mine. Tessa teaches me about courage, patience, strength, flexibility and gratitude. My life has become about being of service in it's entirety, and that has forced me to let go of some of a few of my biggest hang-ups: control, expectations, rigidity, need I go on? This experience has changed everything about Casey and my lives, and most of the time I feel grateful.

On a final note, I would like to express my gratitude for my husband. He has been a source of unending support throughout this experience. Now that we are all living so far apart we miss him terribly. He is working tirelessly to support us while renovating our home to have everything in good shape for our return. Thank you Casey for all that you do. We love you.

Jumping on trampoline with cousins Sam and Elle.

She shoots, she scores!

Playing flower girl with Francis.

Taking the babies for a walk.

Princess tea party.

Bubbles!

Cooking with Daddy.

Daddy, babies and cousins Haley and Alyssa.

We love cousins!

Namaste.

Coloring eggs with Noni, Elle, Sam and Aunty Katie.

Daddies are the best!

Chef Tessa

Day 47

We've been out of the hospital for 10 days now, and are so grateful to have someplace so beautiful and comfortable to stay-thank you Noni and Papa!!! Though we are to happy to be out of the hospital, it feels like there is an eternity between now and the 100 day mark when we get to go home. We spend our time taking medicine (it feels like that takes up quite a bit of time), making, eating, cleaning up meals, going to the doctor and napping. I'm not sure why the time seems to drag on so, perhaps because we're just treading water until April 21. Tessa misses her home terribly at this point.

Tessa has more freedom now, she can go pretty much anyplace outside (as long as there aren't a ton of people) and we try to go for walks, ride her bike or get to the park every day. She is still pretty weak, and feels pretty terrible a lot of the time. The number of medications she's on, the the after effects of the transplant, and the swelling from the steroids have left her muscles weak, her joints painful, and she frequently has tummy pain the wrings her ragged. But we do what we can. Building up her strength a little at a time. She is not allowed in any buildings but the hospital, and then she has to wear her mask. That means I have to sneak in grocery shopping or errands when someone is watching Tessa, though Noni and Katie have been wonderful about picking things up whenever they are out. Don't think I could pull this off without the support of our families. Dee Dee still comes and visits every Tuesday, and it's wonderful to see her relationship with Tessa grow stronger and stronger. We got a wonderful surprise visit from Katie, Sam and Elle on Saturday which delighted Tessa (she loves all her cousins so much!), and we went and watched their soccer scrimmage after breakfast. We've even got to hang out with cousin Dylan (between his crazy number of work shifts)! We are so blessed. My parents come like clockwork every Saturday. Their dependability throughout this makes me love them all the more, and their relationship with Tessa is so wonderful. A mutual joy. My sister came all the way up from LA and is staying the night. She is so great with Tessa, and it's wonderful that we've finally managed to work out a time when everyone is healthy so she could come! My brother, Matt, is going to fit in a visit on friday maybe, we always have so much fun with Uncle Mattie! As I write this I'm overwhelmed by how our family has raised us up and supported us throughout this time. You can't help but feel the love that has woven Tessa into the hearts or our community. This is perhaps one of the biggest gifts that has come to us as a part of this journey. Tessa has had an opportunity to forge some wonderful relationships that will remain important to her throughout her life. It has also given me opportunities to build and expand my own relationships with these same people. What grace.

As we drift through our days here, I feel much like the parent of a 9 month old in some ways. I have re-emerged into that phase where you feel like you are working your tail off, but when you look around you can't quite figure out what you've been doing. Tessa is very needy still, and that is something that will have to be worked with as the time goes by. She has started doing play therapy at the hospital once a week to see if that will help her deal with some of her fears, anxieties, or the structures that she sets that can seem quite rigid at times. She's actually doing remarkably well considering all she's been through, but we thought we'd give her every opportunity to deal with what she's going through in a healthy way.

Casey has been in SLO for the last week. He had to return to work full time, and on top of that is doing some major renovations on the house to get it ready for our re-entry (new plumbling, replacing a really nasty carpet in the playroom with some hardwood flooring, re-tiling the bathroom, putting in new bathtub and counters with the generous assistance of one of my favorite people, Corrin LePell. She and her husband Josh own a tile and marble complany and are helping us with this project, making it all quite easy on us. Love you guys!!!!

We miss Casey terribly, and facetime with him whenever we can. But Tessa misses her daddy and can't wait to see him this weekend! It will be nice to get a hug from my husband and be together as a family. Miss you honey!

We are really incredibly fortunate in so many ways, it is just this state of limbo that makes it hard. We have people we love all around us, we are able to live in one of the most beautiful areas in the state, there are lots of options for getting outside and playing, and we have a huge amount of support. And then there's Tessa's health. Yes, she generally feels kinda terrible, but her labs show us a picture that isn't seen so clearly just by being with her. Her hemoglobin and platelets are getting higher on their on and staying stronger. She has needed relatively few blood transfusions throughout this whole process. Her neutraphils (measure of immune system) is rocking and rolling at like 3500, really awesome. In addition to that her blood and morrow reflects that her system in now 100% donor, which means there is nothing left of her own system that is trying to reproduce cancerous cells. ALSO, her bone marrow aspiration came back showing very little to no bone fibrosis, and that there is remodling happening. We really couldn't have hoped for an outcome this good.

So, focus on the positive, and enjoy the (long) ride is what I'm working on. I miss all of my friends and family we don't see and can't wait to celebrate our return home with a big shindig!

This was the Wall of Love in the hospital where all the cards and drawings from our friends went.

Tessa's family portrait the day before being discharged

Discharge day was exciting and exhausting. Two minutes into the drive home Tessa passed out.

The smorgasboard of medications I have to give Tessa at least twice a day. It's a job all on it's own.

First outpatient clinic visit post discharge.

Playing with the new dollhouse from the amazing Boyd family and their girls, Tessa's honorary cousins Callie and Chloe!

The park behind Noni and Papa's house.

Sliding. By this point she is wiped out and only goes down at my urging.

Having her bike is great. Not too much stress on her joints, she can sit, and still get out and move.

Playing with Auntie Jenny!

Auntie Jenny looks like Hamley!

A beautiful walk in a cool new place. Tessa loves the comfort of her stroller.

The ladies!

Day 36

 Here we are at day 36 post transplant. We've been in the hospital for 47 long days, an eternity. But we have much to celebrate! Tessa's counts are continuing to be strong; her platelets are growing by leaps and bounds. There has been very little bad news in Tessa's recovery so far. She is still on a very high dose of steroids to control her GVHD (Graft vs. Host Disease), but the docs have begun the slow taper of those. We will have to continue to watch and make sure that the GVH doesn't flare up, if it's not kept under control it could become a chronic problem which would be horrible. Aside from that the HHV6 virus is responding to the course of IVIG and Ganciclovir. However, the EBV counts have gone up. The docs are not putting her on any meds for this, but just continuing to watch.

The amazing news comes in the wake of Tessa's first bone marrow aspiration and biopsy post transplant. The doctors were clear that they really didn't expect to see much so early post transplant, and Casey and I both really questioned the need for the procedure given that there will be another performed at 60 days. But what they found fills me with hope and, ironically, fear. Tessa's marrow shows that she is producing both white and red blood cells on her own. There were no abnormalities in her blood. But the thing that makes my breath catch in my throat is that they saw no fibrosis on her bones, and there was already evidence of remodeling. What happens inside me whenever I think of this is overwhelming. There is an explosive reaction of hope and elation immediately followed by an intense fear. I am afraid to really embrace this news in fear that the other shoe will drop. It has been so many months of not knowing what is wrong, being afraid, watching Tessa suffer, going into this transplant not even knowing if it would have an effect on her bones. And now... could it be so "simple"? Will she actually get better and eventually morph back into the happy little girl she once was? Why does this triumph scare the crap out of me?

The other piece of wonderful news is that we are finally being discharged on Monday!!!!! We are all so excited to be getting out of here. There is no question that the next chapter will be a long one (even longer than our hospital stay), and in some ways it will be even harder. There will be little support compared to what we have had here at the hospital. I will miss our nurses tremendously, they are a group of the most wonderful women (with a sprinkle of men thrown in) I have ever known. At Noni and Papa's it will be just me and Tessa. Casey will be gone much of the time, working and doing some home renovations that are badly needed and can't be done while Tessa is in residence due to being immune compromised). It's probably more scary than anything else, I'm sure we'll be fine. We will still have Noni and Papa and Casey's family around. And I know that my family will help as much as they can too. But we'll be there until April 21st, barring any complications (that will be 100 days post transplant), and right now that feels like an eternity. Did I mention that's it's wonderful news that we'll be getting out? :)

Thank you all for your prayers and thoughts, they seem to have worked so far!!!

Building castles out of plastic cups. The most fun is knocking them down!

In recovery after bone marrow aspiration/biopsy.

Reading with Auntie Dee Dee.

Mommy sacked out and Tessa opening Valentine's cards from Noni and Papa.

My favorite Valentines! 

Happy Valentine's Day!

Playing soccer with Ashanti, a 9 year old on the unit.

Hanging out with Nana, Poppie, Uncle Mattie and Auntie Wendy (who won her way into Tessa's heart by wearing an all pink jumpsuit-clearly this girl is awesome!)

Tessa is no longer hooked up to an IV pole! Here she is cracking up at Uncle Mattie as he pretends to be her pole.

Daddy getting his blood pressure taken... perfect of course!

Thank you for all your support. We are looking forward to moving on out of here! Keep the cards and letters coming! 

Day 29

Yes we're all alive and mostly well. Good thing I prefaced my last post with the suggestion that I might not be posting as often or I would have gotten even more concerned emails of the "where did you go?" variety. Sunday night left me with only a few hours of sleep. Despite exhaustion I kept an appointment I had made for Monday to donate blood. In hindsight I will make the suggestion here to anyone who finds themselves in a situation like the one we are in to keep all of their blood intact until such a date that you do not need all your antibodies so much. Monday was another sleepless night, and Tuesday morning found me in bad shape. I came down with a stomach virus and have been quarantined at my dear in-law's house since Saturday afternoon. I did not handle the separation from Tessa well. I started Tuesday morning (knowing that I was going to have to leave and not see her for an undetermined period of time) by unleashing my inner beast at poor unsuspecting Casey. After leaving I proceeded to cry every time I thought about her. It was not pretty. But as we have learned a body can get used to anything. I just signed off of Skype with Tessa and Casey (we spend several hours a day hanging out on line), and she barely even registered the farewell. I'm feeling a little jilted, but glad to know she's quite happy. Casey is such a fantastic dad that he has born up to the challenge of around the clock care with no complaints and is just wonderful with her. 

Tessa is doing really well, her counts bounded up again today which is wonderful. She's on a bunch of meds, but I'm not entirely in the loop right now. I know she's suffering quite a bit of swelling in her hands from water retention, and I gather it's quite painful. There was some talk about draining some of the fluid off of her (not sure how that would be done, doesn't sound pleasant), but as a new doc has come on rotation the decision is to try and let her body adapt on it's own. Aside from that it is all pretty much status quo. She's getting out for her walks in the hall and eating like a champ (thank you steroids). Just a side note, because of all the swelling she has as a result of fluid and steroids (the swelling from the previous course of steroids never had a chance to go down, and now she's on a new course so it's even worse) she has grown. If you are inclined to send clothes we are buying size 7s. I exchange things when I can, but it's not always possible. 

I'm including some pictures from earlier in the week...

Tessa post bath wrapped in warm blankets and getting a foot/leg massage.

Daddy holding Tessa's mask, and Tessa holding her baby's mask on her while the maid cleans the room.

Princess Tessa and her pink paint.

At home Casey and I would swing Tessa in a blanket hammock.

 Tessa swinging in her hammock, she loves it!

Playing soccer bowling in the hall.

Knocking down the bowling pins with the soccer ball.

Nurse mommy working on removing Tessa's central line dressing.

 Dressing change.

This is the view that I've had of Tessa for the last 5 days. 

I'm feeling much better, and the plan right now is that I will return to the hospital tomorrow. That little girl better brace herself cuz I have 5 days of kisses and hugs saved up that need to come out!

As an afterthought I realize that my writing in this post has assumed a rather certain tone...probably the result of watching the first two seasons of Downton Abbey in the last 2 days!!!!