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.