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!!!! 

Day 22 & 23

I'm going to go ahead and let you all know that I may be switching to a every other day entry soon. Must be the half-time slump.

The days are all running together a little, trying to reach back into my mind to report on yesterday. Ummmmm... Nothing remarkable apparently. Tessa's counts are holding strong, the doctors are super happy about her progress. She has been taken off her IV nutrition, fluids and switched to a bunch of oral meds. She's making great progress toward getting out of here. Her IV pole has been whittled down to just three pumps and looks so small compared to the albatross she's been hooked up to for the last month.

Casey did a quick down and back trip to SLO today to get the truck for when he starts commuting back and forth for work. He was back in time for the Super Bowl (which in on tv now and terribly disappointing for all the 49er fans around here). Long day for him.

Wish I had more exciting things to report, but it's pretty boring around here. Just a waiting game until we get to the next step, discharge!

Got some cute headbands from our friends Erin, Brennan and Blake... A girl has to keep up appearances! Thanks guys!

Think I may have managed to upload the video from the other day...

Day 21

Another great day. Tessa is holding strong with her counts. She's eating better, cheddar cheese, goldfish, watermelon, bananas, oranges, and Swedish Fish are among her favorites. The only hiccup is that she has tested positive for HHV6 which is one of 4 viruses that are tested for 2x a week in transplant patients. She tested positive for this once before and was given IVIG (intravenous immunoglobulin) which is basically a concentration of antibodies that is extracted from the plasma of like a thousand donors. After getting IVIG last time the HHV6 went away. She'll be getting another dose tonight in hopes that it will have the same effect.

Was going to attach a couple of videos, but apparently it's not going to work and I don't have the patience to dicker around. So... short blog tonight.