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