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
Monday, May 22, 2017
Thursday, May 11, 2017
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.
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.
Wednesday, May 10, 2017
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.
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.
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.
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.
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