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.