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.

Day 20

Well, today marks one month in the hospital. Cabin fever struck during nap time. I was laying beside Tessa reading, and I could hear a group of nurses (who are all young women in their mid to late 20's) chatting and laughing outside. I was gripped by an intense need to get out of the room. I really wanted to see my girl friends, but for obvious reasons this wasn't feasible. Fortunately the fabulous Dee Dee showed up with her magic bag of books, so Casey and I went out for a walk (just around the hospital). First time we'd been "alone" together in a month. It was really nice to be outside of the room together. On our way back we bumped into the fabulous Dr. Krysta. She's such a love and we chatted for about fifteen minutes about Tessa, her kids and life in general. When we got back Tessa was happily listening to stories.

Tessa is doing so well, every day her counts go a little higher. She went out for a little walk again today. She complained of pain in her legs and didn't want to go, but with enough cajoling we got her out the door. One of our very favorite nurses, Cassi, even went so far as to hide under her desk so that Tessa would look for her. Have I mentioned how much we love our nurses? LOVE them! I'm going to miss them when we leave, they're such a source of sunshine in our days. Anyway, Tessa managed to make it through her stroll before returning to her usual position of laying prone in her bed. We are going to have our work cut out for us getting her muscles back into shape.

If Tessa continues on this trajectory we are hoping to get out of here in a couple of weeks. That would be amazing! We will have a lot more freedom. Tessa will be allowed outside, but not in any enclosed public areas with lots of people (think grocery store, library, school, etc.). Casey can hardly contain himself and asks the doctors and nurses every chance he gets when they are thinking we can leave. Poor guy, guess cabin fever set in for him a little while ago.

Tomorrow starts another month. Happy February everyone!

Day 19

Today was a great day. Tessa's white blood counts hit 2100, and her ANC was in the 900s. So we got her all geared up and took her for a little walk around the unit. She did a scavenger hunt for some of her princesses and a couple of presents (thank you Uncle Eric and Uncle Jack for Cinderella 3 and Sarah for Pippi Longstockings!). She was a little apprehensive about leaving the womb, I mean room. She doesn't like having to wear a mask (who would), and after a month in the safety of her own room it was probably a little scary.

The nurses and doctors loved seeing her up and around. Not too many kids around here moving around. Pretty mellow day aside from that.

Had a quick surprise visit from Auntie Katie who brought Tessa sweet gifts from her cousins and an adorable hat from our honorary Aunt Michelle and cousin Jennifer-thank you! It was great to see someone other than my husband (who is great, and I love seeing), my daughter (ditto) and the nurses. We're being super careful about germs now though, and it's a little weird how scary the outside world gets when the nurses and doctors start talking to you about what can come in on people's clothes or how any little bug can have a disastrous impact on Tessa's recovery. Starting to feel a little twitchy about germs. GERMS!

Love to all!

Day 18

All hail the incredible mother-in-law! I've been feeling a like a truck has run over me, and drag myself out of bed each morning achier that the day before. Today my beautiful and gracious mother in law, Sandy, treated me to a 1.5 hour deep tissue massage. It was super intense, and not terribly relaxing, but I felt like I was floating out of that spa. The masseuse kept muttering about how tight my upper back was and would attack each knot with renewed vigor. I'm a little sore, but feel like I've gotten rid of the rocks that were forming in my neck, shoulders and back. Thank you Sandy! xoxoxoxo

Today was a pretty good day. It's a weird spectrum to try and communicate about. Compared to the lives of children in the outside world Tessa's day was kinda rough. But compared to the other kids on the unit here she's a rock star. Her white blood count was 1800 and her ANC (neutraphils) were low 700s. Not high enough to leave the room yet, but soon. It's also confusing to try an communicate with the outside world about her progress. She is doing really well, but mostly because she hasn't succumbed to many of the terrible possible side effects (fever, infection, seizures, etc.). But it can be misleading. She is incredibly fragile and Casey and I are having to turn people away because of exposure to germs. It's hard to grasp how dangerous the outside world can be for her. After my massage I went straight to the shower and bagged up my clothes. The nurses here don't go outside on their breaks because they don't want to bring anything back in to the unit on their clothes. Tessa has to wear a mask when housekeeping cleans the room; she won't be allowed out of her room without one. Even after her new bone marrow kicks in, her cells will have to re-learn their jobs which can take a year or more! She will be susceptible to everything for a long time. It sounds like she's doing so well because every day is a victory. But if you look at the big picture, each victory is a grain of sand on a sandy, sandy beach.

Got some smiles today... Tessa likes to clip the balloons she got on her transplant day to her sippy during the day, or her blood pressure cuff when they're taking her vitals.

Thank you to Tracey for the beautiful pink pillows, which make her bed cozier, pinker and more throne-like! The nurses love Tessa's room because of all the bright cheerful pink decorations!

On a side-note, I just want to take a moment to acknowledge the passing of an amazing woman. My great-aunt Alice passed away today at the age of 96. She was saucy and classy til her last breath and the final chapter of her generation in our family. She was of great importance in my mother's life. Here is a little something she wrote about her aunt...

I want to acknowledge the passing today of my aunt Alice Stamatis at age 96, and the role she played in my life. She taught me to read, to swim and to flirt. This photo was taken Sept. 16, 2012 on my last trip to see her on Cape Cod. She was a feisty, fun, classy and challenging broad, who became VP at ABC because she told them she couldn't type, so they put her in financials. She outlived two husbands (and I thought she might outlive the rest of us). First generation American of Greek parents, she was headstrong, outspoken, loving and brave - I will miss her.

Rest in peace, Alice. 

 

Day 17

Tonight I attempt to sleep on the couch. I could say that I have been sleeping with Tessa in her hospital bed because she needs me in this trying time and that would be true. But that's not the whole story. I have grown accustomed to her warm little body snuggled up next to me over the last year. Her little head (now even softer because of the short downy fuzz) inevitably finds it's way to the crook of my neck, and her hand will often rest on my chest. She's my Hamley (for those of you who don't know, Hamley is hers special teddy whom she can't sleep without). So it would be just as honest for me to say that in this trying time I need her next to me too. It comforts me, and comfort is not readily available (if you discount emotional eating, vodka tonics and Target). However, lately there has been some other factors thrown into the discomfort of sleeping in a twin size hospital bed with a plastic mattress. Over the last week or so Tessa's respiration has slowed during sleep. Last week at about 5 am our nurse throws open the door and starts nudging Tessa saying loudly, "Tessa, take a deep breath for me. Tessa, deep breaths." I am instantly awake and stricken with panic. Tessa wakes up and looks at me like, "Um, mom?" The nurse tells me her breathing had slowed way down, and so as long as that is happening the head of the bed has to be elevated and she should be on blow-by oxygen (she doesn't have to wear the mask, but the mask is positioned so the oxygen is blowing on her face). The nurse goes over to turn on the oxygen and his stethoscope his the code blue button. Suddenly the door to our room bursts open and 4 nurses rush in. It's comical, but good to know they are ready to respond in an emergency. It only gets better from there. They can't turn the code blue off, so the alarm is sounding throughout the unit (not in patient rooms thank god), and issuing a signal in other parts of the hospital. They get engineering down to our room to turn off the alarm and manage to get the madness back under control. I felt so bad for that nurse. I kept thinking, "This is sooooo something that would happen to me regularly if I was a nurse!" Anyway... Now the head of the bed is elevated, and when her O2 levels get too low we have the oxygen mask shoved between us hissing air in her face. Awesome. My body can't handle it anymore. Getting less and less sleep every night. So I have to cut the cord and move to the couch. Sigh.

Today Tessa's white blood cells were up to 1300 and her neutraphils were around 700! The docs say that tomorrow she will be considered engrafted! Whoohooo! We will be able to take her out of her room so she can walk down the 50 feet of hallway that makes up the stem cell unit. Yay? I mean yay!

She's doing so well, everyday a little better. She was working hard on coloring her Shrinky Dinks today (this will be my first Shrinky Dink experience, and I'm pretty excited!). I told Tessa that I would be cooking the little pictures she was coloring and she looked at me like I was crazy! Love that girl.

Today Tessa also received her first American Doll (baby) in the mail from my cousins Jackie and Laura along with everything that baby could possibly need. The expression on her face when she opened that box was priceless! She held the baby up and the grabbed it to her chest. It is in her bed with her now as she snoozes. Thank you Jackie and Laura! Beyond generous!

Well, hoping I sleep as well as that new baby... Good night!

Day 16

Today Tessa's white blood count hit 1000 and her neutraphils hit 560! This is such good news. Once her neutraphils hit 750 and hold steady for 2 days she gets to leave her room! Of course she'll be confined to the stem cell unit which is pretty small and she'll have to wear a mask, but she hasn't left this room for 27 days. She doesn't seem too terribly excited about the prospect of walking the halls (probably because of the mask factor), but it will be good to see her out and about.

Today Tessa got a visit from a couple of the men in her life: Poppie and Uncle Mattie. There was lots of coloring and crafting (it's refreshing to see so many men decorating pink crafts!). I got out for a long walk; much needed after my mini-meltdown.

Tessa got to play princess to her room full of princes. 

Tessa had a great day discomfort wise. The docs went down slightly on her dilauded dose and took her off of two of the antibiotics she's been on in response to her rising counts. Her rash is getting better, and she's feeling pretty good all things considered. She still isn't eating much because her mouth is "hot". I think this is Tessa speak for her sores are still hurting. She did manage to enjoy a See's chocolate lollipop though! Yummy!

Thank you to everyone for your support and love in the wake of my "full-disclosure" blog. Feels good to get that stuff out, but it does give me pause when I think about all the people who are reading this and witnessing our lives. Oh well, I'm grateful for the willingness of people to share in our story even if it means they get to witness all our messiness.

Love to all.