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.

Days 14 & 15

Meltdown was bound to happen, and it did. Yesterday was a day much like any other around here, with the exception of my mental state. Tessa wasn't in any more distress or pain particularly, everything just caught up with me. I woke up all right, but Casey and I had a disagreement about something and the dam broke. I couldn't fill my lungs because of the iron grip that grief had on me. I found myself trying to cry silently in the bathroom, but I couldn't stop and I didn't want to stress Tessa out. So after giving poor Casey a tongue lashing that he didn't deserve I left. I didn't know what to do with myself or where to go. I just had tears streaming down my face and knew I had to find some quiet. I crawled under a low-lying olive tree and sat there weeping. It's too much to ask of people to watch their children suffer. My mind was fully wrapped in a fog of despair. I could tell that I wasn't going to be able to cry this one out, and all I really wanted to do was lay with Tessa and look at her so I headed back to the room. Casey went out for his bike ride and Tessa went down for her nap. The room was shuttered and dark, and she slept for 5 hours. I sat there in the darkness and ate my feelings. You men probably don't know what this means, but I sense a few women out there nodding in empathy. At about 4:30 I remembered the "mini-bar" my sister-in-law gave me and made myself a vodka tonic. At this point I'm sure some of you are shaking your heads at my too-much-information disclosure or my unhealthy coping strategies, well this is my reality and I had a drink. I actually felt a little better and stuck with the one drink knowing that I'm an all or nothing kinda girl. Casey and I were able to come back together later that night, and we parted in a positive space.

I woke today feeling still a little out of sorts, but in a better place than yesterday. I evaluated where I was and came to the conclusion that the only thing to do was a little retail therapy. Yep, there's another positive coping strategy! I headed over to Target (where all the high falutin' ladies do their shopping!) and wandered the aisles. I find this strangely cathartic and left in better spirits with a couple of baggy dark pink shirts for Tessa. Tessa and I took a nap together and painted some more things pink. Now I'm hiding out in the kitchen writing this while Casey and Tessa watch the Little Rascals.

There has actually been some really good news to share with you all... Tessa's white blood counts are moving up and her neutraphils (a white blood cell that is related to her immune system) hit .5! It's a low number, but it means that her new cells are beginning to engraft!!!! The docs are pleased with the response her rash is showing to the steroids (though she still is crazy itchy and being coated heat to toe with topical steroid ointments). So all in all it's been a good day. She's even given some genuine smiles. Still not really eating, but baby steps. Her mucositis is getting better every day, and I'm sure she'll be back on cereal bars and chicken nuggets in no time.

Thank you everyone for the emails you are sending. I love hearing from you. The only other connection I have to my friends and the outside world is Facebook, and quite frankly I hate Facebook right now. I go on there several times a day because I love to see the pictures, but inevitably I have this involuntary reaction of anger when I see how normal everyone's lives are. How their kids are growing up and learning to ride bikes or draw faces. For a second I have a very ugly internal dialogue. But then the immediate next reaction is relief that my friends kids are ok. And then I just miss everyone. I can't wait til we're out of here. We're going to have a big party!

Love to all!

Day 13

You know that feeling when you reach the top of the track on a roller coaster? The anticipation of the drop is intense. And then you drop. Your stomach suddenly seems to have found a new home in the back of your throat and you want to scream but you're worried you might throw up on yourself. The drop seems to go on forever and you can't wait for the moment you begin to ascend again so that everything can move back into it's proper place. But the switch from plummet to climb is so quick that your stomach ends up in your toes, and what's left of your functioning brain feels like it's operating somewhere around your knees. And then you realize; you're not on a roller coaster. This is life. I feel like my emotions flicker by as quickly as pages from a flip book (remember those?). Rage, fear, sadness, anger, hope, numbness. It's dizzying and terrible. I know that I can't fall too deeply into any one of those feelings because of how easy it is to get lost in there. So I try to breathe as they was over me, noticing my throat clench, where weakness hits, the bouyancy of hope, my gut loosen with fear. And I breathe. One of the things that keeps me from unraveling in this environment is the concept of paying it forward. I don't have many opportunities or abundant means to make a big impression, but I try to grab opportunities. I've mentally located where homeless people have claimed as "home" and when I'm out on walks I make a point a couple time a week to swing by and drop something off with them. Or introducing myself to the new families on the unit and making a connection. It's an interesting phenomena that many of the families don't seek out a connection with one another (probably because this is such an isolating experience), but when you reach out to them you experience this wave of relief radiating off of them. A sense that there is someone else who gets how intensely horrible it is to watch your child go through this unthinkable experience. If we have extra things that Tessa doesn't necessary play with I try to pass it on to another child on the unit. Sharing goodies with the nurses. Little gifts for the housekeepers who work so hard. They are all relatively insignificant things, but they serve to help me feel connected to the undercurrent of life and hope that reaches us all in some way. I also check my email 10 times a day hoping for some message to make me feel less alone. 

Tessa's rash is still pretty brutal, but the topical steroids seem to be taking some of the swelling and reddness down a little. We are lathering her up with the creams and having her rotate her position as her the spot where you are likely to find her, lounging in bed on her rump, has left said rump quite irritated. So we lube up her back and buns and she'll lay on her tummy, or we'll lather up one hip and have her lie on her side. It's a bit of a one man game of musical contortion, trying to get all her little parts a break.

The good news of the day is that Tessa's counts hit .4, which is great. I nurse also confided in me that you kind of want the patient to get a little GVH because it means that the cells are in there, doing there work. Uncle Erik also sent me a good reminder today that another benefit to GVH is that if there are any cancer cells or mutated cells left somehow after chemo, the white cells going on the attack have a good chance of attacking cells you don't want around anyway. The hope is that if they are able to shut this GVH response down quickly she won't be afflicted with a chronic GVH condition (which would be a nightmare). Have hope that she will continue to be the warrior she is and that tomorrow will bring more good news. 

The docs gave her some Ativan (an anti-anxiety med that she's been on before with mixed results) to see if it would have an effect on her agitation (due to being so freakin uncomfortable and locked in a room for the last 3.5 weeks) and possibly her itching. Instead it turned her into a 16 year old girl with a bad case of PMS, the stage where everything seems hopeless and you weep at hallmark commercials? Yeah. That stage. She was an emotion mess this afternoon, crying over everything, super needy, bad case of the "nobody loves me's". Hard not to feel bad for the husband in such situations. Love you Casey!

Here is daddy supporting Tessa during her emotional afternoon. Such a good daddy. Tessa loves her daddy so much, and it's easy to see why. He really is an amazing father. I am grateful that we get to raise this girl together!

Here is Tessa wearing her new SUPER soft shirt from Sarah, Brian, Jacob and William Riley. We love you guys! Jacob's painting is up on our wall of love. We miss our friends, but Sarah you are so wonderful at sending messages and notes. I want you to know that I am grateful for each one.

Ahhhhh. Yes. Well I wanted to get a picture in of my good side... Just love Tessa's little face leaning on my knee as I lean over to (bleep-adee-bleep) her sweet bottom. She still spends lots of time on the commode, but honestly if she's not on the crapper sbe's in the bed. Casey and I are starting to wonder if she just wants to look at her room from a different perspective.

Thank you all for the gifts you been sending. It helps keep the monotony at bay and gives Tessa something to look forward to. It has been the kindness of spirit and generosity of people in our community that keeps me looking out for the pay it forward opportunities. I am continued to be awed by people who have risen to support us, and it has inspired me to try and be more aware. Thank you for the gift of looking outward. 

Looking forward to another day on the tracks! Love to you all and your families!

Day 12

This morning was rough for Tessa. Her rash has spread over her entire body and was left her swollen and itchy. When the doctors came by for rounds they quickly diagnosed it as GVH (graft vs. host). My heart sunk so fast I got vertigo. I suppose it was inevitable. Virtually everyone who has an allogenic transplant (unrelated) gets GVH. This is her body's white blood cells recognizing her new cells as "foreign" and attacking them. The docs have jacked her steroid dose back up to 2mg/kilo, the original huge dose that we've worked so hard to wean her off of. Sigh. But this is what the first response to GVH usually is. They also prescribed a topical steroid cream. She's covered in thousands of these red bumps with areas so affected they look like huge swollen welts. She's extremely uncomfortable to say the least. It could take 3-5 before the steroids even begin to make a difference, so we have a bit of time before she starts to feel any better. What scares me the most is that GVH is something that can potentially stick around for a very long time. It can become a chronic condition that she will have to deal with for years, or possibly forever. Please don't let that happen. I was so hopeful after such a promising couple of days that this news was all the more painful. But that is how it goes around here, things can change on a dime.

It's hard to feel too badly about your own situation when you live in a place like a stem cell unit. I met a woman this afternoon who has moved onto the unit just a few days ago. Her 12 year old daughter has Downs Syndrome and has been through chemo 2 times before for her cancer over the last 3 years. Transplant is her last line of hope. On the one hand being here is isolating from reality, but you're surrounded by people who have been through hell and help keep you looking outward. Seeing how much suffering is around you keeps you from getting mired in your own situation.

Auntie Katie came by with her typical smorgasboard of culinary joy. It was wonderful to see her, she's always a breath of fresh air. She is one of the most generous women in the world. She went over to the shopping center to see if she could find some big panties just because the ones that Tessa has are chafing her rash. Words are not sufficient to thank the amazing people who make themselves of service to Tessa.

Hoping for a restful night.

Day 11

Tessa's counts hit .2 today, a day ahead of the optimistic guess! She's is my little warrior princess. The docs said that she is doing great, but that we should expect her counts to go up and down. Hopefully we'll start to see some real movement in the next few days. So exciting! 

Tessa had both of her grandmothers doting on her today. Seriously, this kid has been through hell but she's pretty stinkin' lucky to have so many people who love her. They played, read and hung out together. Look at all of these princesses! 

Here is Tessa and Noni watching Peter Pan (again!), thank you Uncle Eric and Uncle Jack!!! Can you see how engrossed they are? It's a trip to watch some of these old movies again. Remember how the Lost Boys go out hunting "Indians"? Plus there's a whole song about how the "red man" got to be red. Crazy. You can see the bath time princesses that she's holding sent to her by George, Amy and Chloe in addition to a Sophia the First book that we love! She was even more thrilled that Cinderella made an appearance in the story! Thanks you guys!

Later Dee Dee came by with dinner and her magic bag of books. Here Tessa is showing her the skin rash that she has all over. 

I love this picture of the two of them snuggling. Abble clabble flabble (a Knuffle Bunny reference)! Not sure which of these girls is cuter! You'll notice in the right corner of the picture Baby Tessa (that is the name that all of the dolls get to one degree or another). This is a bald doll that was sent to Tessa from my dear friends Meena, Paul and their adorable little girl Jenna. Thanks you guys! Tessa loves it, as do all the nurses!

Tessa's mouth and general condition are improving, but she had a rough day regardless. She has this rash over quite a bit of her body that has progressed over the last couple of days. The itching drives her nuts, and we're running pretty low on options for anti-itch meds. She was also so exhausted today that her threshold for just about everything was pretty low. We love the family visits, but mama's going to have to become a little bit of a nap nazi in the future. She just can't handle skipping naps right now, and if she goes down past 1:30 she doesn't get up until 5, which means we're up until 10:30. And mama just can't handle that. Going to have to have earlier visits that end by around 12:30, 1 at the latest. My pre-emptive apologies! Until Tessa is feeling better and has more energy she's just going to have to get a siesta in.

This is how Tessa and I sleep, smooshed together in our twin bed, snuggled close. I kinda love it despite the low comfort level. I can hear her rumbly breathing even through my earplugs (ok, it's more of snoring since we've checked in to the Hotel Stanford), and it soothes me. As she's falling asleep she has taken to mumbling a list of pains (my toes, my fingers, my arms, my wrists, my tummy, my head, I'm itchy) over and over until she passes out. At the beginning of this phase I would try to comfort her until I got that she was comforting herself. So now I lay beside her and listen until she drifts off. "My toes, my arms, my wrists, my tummy, zzzzzzzz....." 

She is my little angel. She brings me joy. Every moment spent with her is worth the worry and fear that has come to us. i would choose this path again just to be with her. 

Good night sweet angel.

Day 10

Praise Buddah, Allah, God, Mother Earth and anyone else who heard our prayers! Last night was long and rough, but today was our best day yet! Tessa's sense of humor was in attendance today, and we had lots of smiles. Whenever she gives a genuine smile I feel my heart split open and warm me to the tips of my fingers and toes. It has been so long since she has been happy. She still isn't eating and is subsisting on ice water and IV nutrition, dilauded and tv, but the light is clearly there at the end of the tunnel. The docs are so pleased with her progress, she's doing really well when you look at the spectrum of where children normally are at this stage. They are optimistically betting that her counts might hit .2 by Thursday. This is exciting, but to put it in perspective we want 500 for 2 consecutive days before she's allowed out of her room. But still!

Uncle Mattie came by today and hung out for a few hours. Made the Tessa smile and lots of paper cranes. We watched some of the classics as well today. Peter Pan arrived in the mail (minus a note, so we don't know who sent it ?!?). Tessa was so excited that she hugged it to her chest! We are currently on our second viewing. Also watched The Jungle Book and Cinderella. Yes, we watch a ton of tv. Also played with beads and read some stories. Baby steps, but she's finally feeling well enough to do some of those wonderful crafty activities you have all provided us with!

My pictures didn't turn out great, but was trying capture those smiles!

Happy girl!

Day 9

I realize as I write these entries that they are becoming repetitive. So it goes in here. Same Bat time, same Bat channel. Her mouth is still hurting a lot, she stills has lots of sores on her cheeks, gums and in her throat but the ulcers on her tongue are starting to heal. She feels crappy in general, but she is a fighter. 

This morning she played with her dollies. She took good care of Baby Tessa when she got a blood nose. A little later Nana and Poppie stopped by for a visit and told stories and played. One of my favorite times of day is nap time. Tessa and I curl up together and snuggle until we pass out for a couple of hours. 

Tessa and her daddy did some coloring this afternoon on her new coloring pad from her cousin Giladreal. All in all a very productive day. 

I know it's not a terribly exciting entry; welcome to our world. :)

Day 8

Things that I will miss about being in the hospital:

1) First and foremost is the daily housekeeping. I mean really, no dusting, toilets, mopping? Gonna be a hard re-entry.
2) Having Casey do my laundry.
3) Room service. Ok, the food is nasty at the hospital, but they bring it right to you! I'm going to miss the yummy meals family brings for Casey and I even more though.
4) Convenience. It's cramped quarters here, and there's no privacy but you have everything you need or the nurses will get it for you (ice packs, meds, potty next to the bed, etc.)
5) Nurses. These ladies (and they are 99.9% ladies) are awesome. They are almost without fail sweet and gentle spirits who want to make Tessa feel better. I could never do their job, and I'm grateful for how amazing they are.
6) How easy it is to maintain a routine. This is probably in part because of 1, 2 and 3. When you don't have the housekeeping stuff to do you can focus more.

I'm sure there is other stuff that goes on this list but that's all I can think of for now.

Tessa is doing pretty well. Her mouth actually looks slightly better and her counts are at the very beginning stages of heading upward. It will still be a while before she feels better, but I found myself grinning when the doctors were in here on their rounds tossing around the word "better". She's very tired and a little out of it in general, thanks to the dilauded. But the behavioral effects seem to have subsided, and I'm not going to lie-it's a little of a relief that she's so out of it. She isn't writhing in pain and is able to rest. She's still terribly unhappy and hurting, but it is so wonderful to know there is an upswing in her future.

Fear did grip me last night, though. Yesterday her toes were hurting. This is generally where the bone pain starts when it begins to come back. Then in the middle of the night her thumb started hurting. All I could think about was the conversations with doctors about how the transplant may not address the thickening of her bones. We spoke to the doctors this morning during rounds and they talked about the normal remodeling of bones that will happen in all transplant patients. It is too early to know anything about the status of her bones, but I know I have no control over any of this. So I absolve to not get tangled in my fear and focus on our little triumphs.

Looking forward to a possible visit from Noni and Papa tonight (depending on when Tessa wakes from her nap). Thank you to Aunty Jenny for the wonderful book of bedtime stories! Wish you were closer seester, we miss your "Make the Babies Talk" skills!

Love to all!

Day 7

We had another pretty restful night, yay! Only getting up a couple of times is a victory in my book. She's in a lot of pain when she first wakes up because we get a little behind on the meds and her throat is all dried out adding to her discomfort. After about 3 pumps of the PCA (extra dilauded doses) and some ice chips she is able to return to her normal level of misery. Poor monkey. 

One of the highlights of Tessa's day is the arrival of her daddy in the morning (mine too of course). While mommy was out for her walk Daddy treated her like a princess, and she soaked it up.

Over the last few days Casey and I have been engaged in an ongoing "discussion" (all very civilized I assure you. Yeah.) about whether to cut her hair or leave it in it's wispy patchy state until it all falls out on it's own. In addition to all the other enjoyable features that are part of living in the hospital with your 3 year old while she undergoes chemo and BMT is the relationship bootcamp you get to participate in with your significant other. I won't go into the details, but an agreement was reached (without too many bruises) to cut her hair. 

When I brought out the clippers she was having none of it. So I did my best with scissors. It was a shock for Tessa when she looked in the mirror, and she continues to ask if her hair is going to grow back the way it was. She really loved her long hair (our princess). We reassure her that her hair will grow back again. Once I reframed the situation by saying that she looked just like a newborn baby without any hair, she seemed to jump right on board. She keeps asking if we love our newborn baby. Which is immediately followed by "Of course!" and lots of snuggles and kisses on her bald little head.

She pulls off the look pretty well in my book. We had lots of company for the event. Noni, Aunty Katie, Nana and Poppie all were in residence. It was a definite I love Tessa party. I am so grateful for these amazing people in our lives who come to see us several times a week to cheer up Tessa and sustain Casey and I with food (yay) and emotional support. There is a family a couple of rooms down who has no one, no friends in the area or family to speak of. We are greatly blessed by the community that surrounds us.  

This afternoon Nana and Poppie even got Tessa to smile and laugh! That sound has been so absent for so long that it startled me! Thank you for the best gift ever!!!

We are grateful for all of you who are a part of our lives and a part of the web that is created by the invisible strings of love that bind us to Tessa.

Day 6

Finally, some sleep! Tessa only got up once last night, and then thanks to our personally guardian Casey, who kept the nurses away, we slept until 9:15. Amazing! I felt so much better today. For a while.

Tessa's itching has been totally out of control. Plus her pain has been unmanageable even on huge doses of morphine. So today they switched her to dilauded, an even more intense narcotic. She's been totally drugged up, her eyes rolling in different directions. Her pain has been better controlled, but Tessa has this adverse effect behaviorally. She becomes filled with anger and rages at us. Today is the first day I broke down and cried. Her ferociousness on top of watching her pain finally became too much for me. We have been given the option to switch back to morphine, but it's not a choice. Do we chose a medication that does a better job on her pain but fills her with rage. Or do we choose a med that doesn't do as good a job taking care of her pain, but leaves us with a little girl that more closely resembles the one we started with. The choice is not about us, so we choose dilauded.

Her hair is almost gone. As it disappears it feels almost like the last vestige of normalcy is going with it. Sigh. My spirit is feeling tattered, and we're both ready for bed. As usual it has taken two hours to write this entry. Between the fetching and spooning of ice, the constant attention that Tessa needs, and the million things that she requires (applying of creams, trips to the potty, and the various other deeds). 

Good night all.

Day 5

I thought for sure that Tessa would sleep like the dead given how loopy and sleepy her morphine dose was making her. Foolish me. We were up almost every hour. I was (am) so exhausted that at one point when she woke me up I didn't even remember how we got back to bed. At another point I woke up with a cup of ice melted on my chest, apparently I had passed out in the middle of spooning ice into Tessa's mouth. So tired this morning, but cranked up my music and went for a walk anyway.

Today has been more of the same...mouth pain, peeing and misery. The doctors increased her lidocaine 15 fold, but she's just in so much pain it's madness. Tessa has skin rashes and irritations all over her chest. She itches all the time from the quantity of morphine she's getting, and no matter how much atarax, hydrocortisone and benedryl she gets it never really seems to go away. She is so uncomfortable that Casey and I feel completely useless. We sit with her all day spooning ice water into her ravaged mouth, applying ice packs or creams. Meanwhile she can only croak at us "Do something!" Talk about feeling helpless.

Despite how incredibly awful this whole reality is the nurses say it's incredible that she's still walking and that she's only getting put on IV nutrition today. She actually has managed to eat a little bit of bread, which is mind-blowing considering how tortured her mouth is.

Her hair is falling out by the handfuls now. I thought I was prepared for this part, but when I brushed her hair this morning and came away with a chunk I had to choke back the sadness. If I had any skills with cards I would be an amazing poker player. Ok, maybe not.

Tessa and Mommy passed out about 2 o'clock for a few hours. Overcome by exhaustion. How do you like that eye mask?

Noni came by for a visit today on her way to work and dropped off some food. She loves her Tessa so much and is such a support for us. Thank you Noni!

Day 4

Tessa is being a real trouper in a really unspeakable situation. She woke up with tons of pain in her mouth and throat. She couldn't even drink, so now we're spooning ice water into her mouth. She also has a tough time talking, her words are really thick and slurred which makes her hard to understand which in turn makes her even madder. The doctors put her on a lidocaine drip to help with the pain, and while she's still miserable it does seem to help a little.

She also has developed patikia on her legs as a result of low platelet counts. These are spots on her skin where she has bled into her hair folicles. This experience has been an education in obscure medical conditions. Better than med school (sorry Rach!). Anyway, she's going to be getting a blood and platelet transfusion today to help bring up some of her counts until her body start doing it on it's own.

Tessa got a visit from her Noni yesterday who brought these really cool prince and princess puppets for Tessa and dinner for Casey and me, thank you Noni! Today Nana came by and played with Tessa for a bit until Tessa and I passed out and took a nap.

Auntie Katie also came by with homemade soup, homemade bread and homemade cookies. This woman makes the most incredible food. Thank you so much Katie!! I think my food fantasy would be to have a big family reunion catered by Katie, my Aunt Julie and my mom and dad. Oh baby.

Tessa's hair has also begun to fall out in earnest, so we'll probably be shaving her head soon. It'll be weird, but we're trying to play it up. The biggest plus being that she'll no longer have to wash her hair, which she hates!

Until next time...

Day 3

By the time I get to the end of the day and try to think back to morning I can't remember what was today or the day before. Everything is beginning to run together, and the days are so long it's hard to believe this morning happened today instead of a week ago. Fortunately the nurses are so pleasant and friendly that one begins to look forward to their comings and goings. For us these comings and goings are virtually constant.

Tessa spent most of this morning in agony because of her mouth. The ulcers on her cheeks and under her tongue look like huge canker sores and cover most of the surfaces in her mouth. Her throat is in a lot of pain, so I imagine they are present in there as well. She can no longer eat anything because of her mouth pain, not even popsicles. The flavors make everything sting. The only thing she is ingesting at this point is water and ice chips. She occasionally licks the pink lollypops we get from the Trader Joe's "treasure chest", they are the only thing that doesn't hurt. Because of how much pain she's been in they increased her morphine dose twice today. She is now getting a pretty hefty dose, but is feeling better.

It's comic to think that there was a time I thought I would be reading or crocheting while Tessa lay in bed sleeping the days away. Not even close. Casey and I are wearing holes in the chair next to her potty and a path between our room and the kitchen. She is still spending hours on the potty, literally. I am constantly running to the freezer to get ice for her drinking water or shaved ice for her to eat. I can't believe how fast she goes through it all, but enough that I'm walking miles a day just traveling the 40 feet from here to the kitchen and back. That's pretty much all we are doing all day. Telling the nurse she needs more meds, getting ice, sitting with her while she's on the potty, or trying to soothe her in some way.

Anywho...hopefully the increase in meds will make tomorrow easier.

Tessa gets an xray every Monday. One of the nice things about being in-patient is that they will bring the equipment to you. Say cheese Tessa!

Day 2

 Tessa woke up this morning pretty unhappy. She gagged when she tried to take a bite of something, so we nixed the eating for a while. Her mouth and throat has become quite sore and swollen. She is able to eat on and off, but everything tastes "spicy" or is too rough on her mouth. Her taste buds are being killed off my the chemo. They will come back eventually, but it will take a while. Because we were hitting the PCA button so frequently, they increased her basal dose. Since then she's had a pretty good day.

Tessa had a really good time playing and reading with her daddy. He even made the babies talk for his Tessa! What a good daddy.

After the hard time that I found myself having yesterday I knew that I was going to need a really good walk to survive the day. There are wonderful pedestrian trails all around the Stanford campus. The cold air is wonderful and makes me feel more alive. Even at 9:30 there is still frost in the shadowy places of the woods. It was peaceful and rejeuvinating to be outside on a quite Sunday morning.

Pedestrian trails around Stanford

Uncle Mattie came to visit in the afternoon and helped Tessa to put a second coat of pink paint on her remote control car. 

Tessa really enjoyed the process of painting her car. Focused little bean.

Had a really good time with Uncle Mattie. Come back soon!

Dee Dee came by this evening and read books to Tessa. She is so wonderful with Tessa and such a patient animated storyteller (our Tessa is just like the interrupting chicken with her questions, little smarty). Dee Dee is reading Knuffle Bunny to Tessa for the 10th time and acting it out with the babies. Did I mention that she also brought us dinner and See's candy? We love you Dee Dee!!! 

Lots more smile today. Thank you!!!!

Day 1

I wish I could report that now that we're counting up instead of down things are improving. The honest truth is that the days are eternally long and Tessa is pretty miserable. She has developed mouth ulcers and they are moving into her throat as well. She has been itching, headachy, hurting, and grumpy as hell. The other day I say a picture of Tessa that my cousin posted on Facebook from 7 months ago. She looked totally different and had a big smile on her face. It broke  my heart. I miss my little happy girl. I feel like a terrible mother saying that. I know she's miserable and crazed from pain and meds. She is a champion and my admiration for her knows no bounds. But my heart is worn down from watching what life has forced her to endure.

We had visits from Auntie Julie, and cousins Haley and Alyssa, and later Auntie Katie, Uncle Marc, and cousins Sam and Elle dropped off dinner and hung out. The visits were hard as Tessa is just unhappy. But her cousins are incredible patient girls who didn't bat an eye. My love and respect for them grows every time I see them.

I got to go out for coffee with an old friend (she's not old, quiet the contrary). Annie is a wonderful sensitive woman with a heart of gold. It was so wonderful to see her and catch up.

Tomorrow is two weeks in the hospital. We're told the next week will be pretty rough. She will continue to feel pretty bad and will probably start losing her hair. I asked the night nurse the other day if she would start to feel better in the next few days. The pity in her eyes was palpable as she looked at me and said, "Oh honey, she's not going to feel better for a while. This process is like getting run over by a truck and then just to be sure it's got you it backs up over you." Oh. Well, gotta keep your eye on the future. Sigh. Too bad it feels so far away.

Visit from cousins

Painting new remote control car pink

For about 10 minutes this afternoon Tessa started smiling and asking for hugs. Salve to our aching hearts.

Re-Birthday Day 0

This is what we have been working towards, Day 0. We are so grateful to be here, and grateful to the young German man who signed up to be a bone marrow donor. Without him our options might be very different. I know that I should have some really moving things to say about our experience today, but to be honest I'm just too tired to try. Instead I'm going to include an email that my mother wrote, a post from my beautiful cousin Rachel, and some photos. Thank you all for helping us get to this point. I know there are many shoulders for us to lean on as we continue our journey.

I was so moved by the experience of being present as Tessa received her bone marrow transplant. It was not just another day in the hospital...

Dad had insisted we go today, despite his commute fatigue. He was right.  When the docs brought the relatively small bag (142cc) of bone marrow, flown in from Germany, into Tessa's room, there was a sense of celebration and hope. They read the info on the bag and matched it to her wrist bracelet ID info to verify it was the right marrow and patient, and hooked the bag on the pole and plugged it into T. The nurses fiddled with the flow rate and when they were satisfied, the marrow started to flow into her - It was mundane and spine tingling -  The docs talked about how on 9/11 the only plane allowed to fly through NY airspace was one carrying bone marrow for a transplant.  In addition to the three transplant team docs who had come to oversee the event, Dr. Krista (her oncologist who is no long very involved) came in from her rounds to be part of the moment- she adores Tessa, Sarah and Casey - she had tears in her eyes as she hugged the Roos family - 

Later the nurses brought balloons and a big poster signed by the team wishing Tessa a happy rebirthday. 

Our inimitable T, feisty and dictatorial, was pretty oblivious to the significance of the day, except that it meant getting presents. She was too uncomfortable to really engage with anything for long, and spent most of the day on the potty feeling like she needed to pee... but she was pretty adamant that she felt that there should be a lot more people in the room to celebrate her birthday - our little girl ordered a nurse to get rid of the orange and green balloons she brought as a gift - there is no place for those colors in Tessa's pink universe. 

We are grateful to have been there and watch it all unfold.

-Carol Pendergast

Today my beautiful little 3 year old neice, Tessa, is getting a bone marrow transplant. Please keep her in your prayers. But better yet, PLEASE SHOW YOUR SUPPORT by considering joining the bone marrow donor registry!! You can do it really simply be visiting BeTheMatch.org and signing up. They will send you a kit in the mail, you swab your cheek cells, put it back in the envelope and send it in. Then they have your DNA on file and you could save someones life anywhere in the world! Thank you for your support! Good luck Tessa!!!!

 

-Rachel Stamatis

Happy Re-Birthday to me! 

Tea party

Dr. Krysta stopped by to be a part of the day she was so instrumental in helping us reach 

Checking to make sure the numbers on Tessa's ID bracelet and the marrow match

Me and my marrow!

My new marrow is in me!

Re-birthday party

Even got a few smiles

Love that Nana and Poppie!

Bladder ultrasound

Got to have a visit from Auntie Katie, Sam and Elle (love them!) and got an aerosol antibiotic (it's a day for firsts!)

We love you all!!!!