Sunday, February 28, 2010

Three Months Old

Go to Bonnie's blog here to see photos and an Emery update. Hard to believe our little girl is already three months old! And what a busy girl she's been. :)

Sweet Article in the Amarillo Globe News

Click here to read a very nice article by Jon Mark Beilue in the Amarillo paper. It is heartwarming to see the outpouring of love and support for our grandbaby and her parents. Thanks to all the wonderful people in Amarillo--Bonnie and David's coworkers, students, community friends and those they've never met who have done so many things to help. We appreciate y'all more than you will ever know!

Saturday, February 27, 2010

Saturday round up

David got in on Thursday night and brought some presents for Emery from Bonnie's hairdresser in Amarillo, including this cute headband with a big bow on it. Precious!

Cute girl is filling out a little bit, huh?

Friday morning we went to the hospital for Emery's outpatient Occupational Therapy evaluation. She is doing well overall and the OT just wants us to continue to do the things that the inpatient OT showed us--stretching and flexibility exercises on Emery's left arm and hand, range of motion, and motor skills like getting on her tummy, holding her head up, turning her head to both sides, reaching for toys and grasping with both hands, turning over, etc.

She recommended that Emery come in for therapy on Clinic days but we have to wait for a schedule to get set up so that could take another week. Meanwhile, we are seeing lots of improvement in Emery's skills already. She is trying to turn over and can hold her head up a lot longer than she could even a week ago. She is also using her left arm and hand more. Go, Emery!

David and Dan are proving what handymen they are. They've installed a new toilet in one of the bathrooms and are quite proud of their work!

You can do it, guys, you can do it!!

Here's Emery trying out a sling. She liked it and went to sleep. Nice! There's not a whole lot more to report today. Earlier in the week Emery had a couple of days of seeming like she didn't feel very well--it's hard to know if that's from the chemo itself, from the injections she has to have every day, or something else. Yesterday we were glad to see her back to her happy self. She did not have to see the doctor on Friday but we return to the Clinic on Monday and will see if she needs transfusions at that point. Hope everyone is having a good weekend!

Wednesday, February 24, 2010

Clinic Day

We went to Clinic well prepared to stay for hours and hours if transfusions were needed again. Guess what! Labs were fine and we were in and out faster than ever before. It's normal for labs to be good this early after chemo but last time Emery was a little bit sick and needed transfusions right away. We were happy that was not the case after this last chemo treatment.

Bonnie and Dr. Thompson. We were laughing about how hard he presses on Emery's tummy, when we are afraid to push down too much. He said he loves pressing on squishy baby bellies.

We wonder how Dr. Thompson ever manages to get through the day if he gives all of his patients as much time and attention as he gives Emery. He is so nice to answer every question and discuss anything and everything.

This is one of the waiting areas in the Oncology Clinic. I wanted to get some photos of the places we write about but also have to be careful of other people's privacy. This is the Infusion Center, where there are several different rooms where people wait for appointments or actually sit and receive IVs or other treatment. The #16 jersey on the wall belongs to Craig Waibel, the soccer player we met.

This is the entrance to the Infusion Center.
So we had an easy Clinic Day today--left the house at 10:30 and got back home around 4 after a quick stop at the Post Office. Yes, that is an easy day. The rough ones are the ones that start at the same time and end at 1 AM.
Bonnie felt like having French toast for dinner so we had a nice little breakfast tonight. Lauren and Dan came home and talked us into going out to a Mexican restaurant with them where we just ate chips and had a drink while they had their supper. Then we had to try the flan and the tres leches cake.
Tomorrow the home health nurse comes to change Emery's dressing and Friday she has her OT appointment back at the hospital. She does not have to go to Clinic again till Monday. Dr. Thompson is very happy with her progress and says she is "perfect." We agree!

Monday, February 22, 2010

Emery's Guide to a Successful Hospital Stay

First of all, bring lots of stuff. I was happy my parents decided to bring my "Nap Nanny" this time. It makes sleeping in that big old metal crib a whole lot more comfortable. Also, bring toys. It's easy to get bored. The good toys make noise and are fun to watch. Don't forget lots of snacks. Candy is good (not for me, I can't eat it yet. But I think my parents like it). A big container of water saves on buying drinks. Several changes of clothes should be packed, even for a short stay. I like to spit up. Not just on myself, but also on the person who's holding me. Bring baby clothes and burp rags. Also parent clothes.

During boring periods, my parents make me work on things like holding my head up. Sometimes I don't mind too much, especially if there's nothing else going on. I am getting pretty good at it and it's almost kinda fun sometimes. Not always.

It's good to have a hobby or something. My Gigi is learning to knit. I am not sure what's so interesting about making one stitch over and over and turning it into a long black thing, but she seems happy that she is getting somewhere. Her real hobby is doing stuff on the internet but she is trying to look like she's not addicted to blogging and facebook and emails. (Who's she fooling?)

Even at times when I'm not all that bored, my parents decide that I should work on my tummy AGAIN. I know they think it's for my own good but really, couldn't I just take a nap?

Definitely bring the laptop. Texas Children's Hospital has free wi-fi! Wowie! Mommy, Daddy and Gigi are very excited about this little benefit. They can send emails and check facebook and write on blogs and load up photos for all of you to see. Sometimes they claim they are "working."

If you have to get chemotherapy when you are in the hospital, it really helps if you have Mommy or Daddy to hold you till it's over. Then it's not so bad.

Sunday, February 21, 2010

Nice, quiet weekend....Well, except for the part about being in the hospital and having chemo. :)

Emery did well with her first night of chemo on Friday and Saturday was relatively uneventful. We held Emery and played with her, watched some Olympics and had a Seinfeld dvd marathon. Two Occupational Therapists came in and worked with Emery on using her left arm and hand, holding up her head, working on her trunk muscles and the dreaded "tummy time," which she is not thrilled about. They were very helpful and gave Bonnie and David instruction sheets for range of motion exercises and developmental activities. We also discussed having Emery come in for some outpatient OT when she comes for her Clinic appointments.

Here's Bonnie working with Emery on using her left hand.

You can tell we've been at the hospital a few times now because we came in with everything we could think of possibly needing! Emery loves her "nap nanny," so we hauled it along and we are glad we did. She can lounge in it and watch her crib toys or see what's going on in the room, rather than lying flat on her back. She also sleeps in it and seems to be very comfortable. We brought her play gym, too, so she doesn't get too bored. :) She's been very happy and pleasant and does not seem to be suffering any ill effects of the chemo. She'll have an occasional fussy period but it doesn't last long and most of the time she is smiling and in a good mood. What a sweet girl!
I left early last night since David was here and everything seemed to be going fine. Becky, Sean and I went to an Ang Lee film festival at Rice University, where we watched one of his earlier films called "The Wedding Banquet." It was partially in English but subtitled (he's from Taiwan). We enjoyed it as well as the panel discussion afterwards. Then we had to stop at a place called The Dessert Gallery for some lovely cupcakes (Becky and me) and key lime cheesecake (Sean). Just the right finish for the night. :)
Emery handled chemo well again last night and slept for several hours, allowing Mommy and Daddy to get some rest, too. This morning, Sean brought me to the hospital and picked David up to take him to the airport. David will be back in Amarillo for most of the week and we are anticipating being discharged from the hospital around 8 PM tonight if all goes well with the last dose of chemo.
The OT has been in again and Bonnie and I also worked with Emery a little while ago. She held her head up really well while on her tummy today! We were very excited! Otherwise, we are just hanging out in the room and letting the day pass us by.

Friday, February 19, 2010

Round Three Begins

We started the morning in the Oncology Clinic. It's strange how normal and routine these days have become. A few months ago, we would have known nothing about what it must be like to have a child or grandchild with cancer and what it would be like to go through treatment. Now we know our way around the clinic and the hospital, which service is on which floor, where to go for MRIs and CT scans, where to park for what, where to find food, videos, books, the laundry room, or the best cell phone reception, what time different places open and close, which elevators go to which floors, what to pack for a long day in clinic or three days in the hospital, and the names of many doctors, nurses and aides who have worked with Emery throughout her treatment. We know about flushing central lines, dressing changes, transfusions, IVs, medications, giving injections. We know how long it takes to get from Katy to Hobby Airport and which alternative route works best when traffic is backed up. We know that the HOV lane on the Katy Tollway changes to "toll tag only" at 8 PM, even if you are already in the lane and can't get out. We can find Shipley's Donuts and Starbucks in the morning if the traffic isn't bad and we're actually early for an appointment. And we know there's no point arriving at the Clinic before 6 AM because the elevators are locked till then. Oh yeah, and if you have to get stuff out of your car and it's valet parked, they'll bring it to you, let you unload, and repark it without charging you twice.

I am still a little bit shocked to see so many children with cancer. It doesn't really hit you until you see a bunch of kids in the same waiting room and realize that they all have a cancer of one kind or another. Today a group of young women invaded the clinic to have a dress-up party with the kids in the waiting area. They had cowboy hats and sheriff's badges, makeup, tiaras, feather boas, and colorful sunglasses for the kids. We saw some of the cutest little bald headed girls all dolled up and smiling so big and happy. Bonnie and I both wanted to take their photos but we thought it would be intrusive and their parents might not want them on the blog (even though we really wanted you to be able to see how cute they were!) The parents weren't nearby and it seemed like it wasn't appropriate at the time. But, oh, they were having so much fun. Just adorable.

We spent a couple of hours in the Clinic, had Emery's labs done (all were good) and got some IV fluids started. Dr. Thompson showed us the CT scans and MRIs on the computer, which was very interesting, though a bit difficult for untrained eyes to understand completely. One thing was certain: the tumor was LARGE in the beginning and is much smaller today. We could definitely see and understand that part!

Emery was readmitted to the 9th floor (Oncology/Hematology, our home away from home) this afternoon. She'd gained some more weight and is about 9 1/2 pounds now! Good job, Bonnie and Emery!

Chemo did not begin till fairly late tonight because the nurse had to collect 30 cc of urine for some lab tests before chemo could start. Sorry to be indelicate, but a tiny baby just does not put out a lot of urine all at once, so we went through quite a few diaper changes before they had enough to do the tests. I left the hospital about 11 PM and Emery was sleeping peacefully while the chemo was being administered. I am hoping she had no problems with it and that all three of them will have a quiet night. Bonnie and David are sleeping in the room with their girl, of course. David will be here till Sunday, when he will go home for another week of teaching and then come back again next weekend.

Here's hoping that these three days of chemo are uncomplicated and that Emery's tumor will continue to respond well to the treatment. She will finish chemo on Sunday but we are not sure yet when she will be released from the hospital.

Thursday, February 18, 2010

Amazing, Exciting News!

Getting ready for her MRI

Becky holding Emery

Cutie pie out for lunch

Jim treated us to lunch--thanks, Jimmy!

Emery was such a good girl at the restaurant!

Reaching for toys!

We finally have all the info we needed to put up a post about Emery's wonderful progress. We thank you for your patience and know you will agree that it was worth the wait! Emery's tumor has diminished by 80% and is not putting as much pressure on her spinal column as it was before! This is much better news than we expected or even hoped for! Her doctors are all thrilled and feel that she is doing beautifully with her treatment. They discussed treatment options, which were: do nothing and keep a watch on the rest of the tumor, continue with chemo since she has responded so well, or perform surgery now to remove the remainder of the tumor. It was decided that chemo is the best course of treatment. Surgery is still risky because of the placement of the tumor, and there is not enough data on tumors near the spine to know if watching and waiting would be beneficial.

We are so excited and happy to have this positive news after weeks of hoping and praying and wondering how well the chemo was working. Thank you all for your love and support as we have continued this journey with our precious baby Emery. She is definitely surrounded with so much love from so many people.

David will be in this afternoon and will spend the weekend with his girls. Emery had her dressing changed on her central line this morning and then we went to meet my friend Jim who happened to be in town from Abilene and gave us a call to go out for lunch. So nice to just relax and chat! Emery will go to the clinic in the morning and will be readmitted to the hospital for chemotherapy tomorrow, Saturday and Sunday. After she is released from the hospital, we will begin the outpatient process of clinic visits, injections, and lab work till all of her levels are back up to a good range. We are still not sure what this means in the overall scheme of things but will be here for the three weeks of the third round, as far as we know right now. Then it will depend on how well the tumor has responded to this round.

We're all wearing big smiles!

Wednesday, February 17, 2010

No call yet....

Sorry, everyone, but we did not hear from Dr. Thompson tonight. Hope to be able to update you tomorrow.

We had a quiet day, which was nice! Slept in a bit, had bagels from Einstein's, Bonnie and Emery took a walk in the sunshine and fresh air while Becky and I went to Target. I am really happy about the fact that the Houston and Katy Target stores also include a Starbucks. Not only can I get my Target fix, but I can also have a Venti black iced tea with half the amount of sweetener and lots of ice. Bought some birthday cards and cold medicine. Stopped by the Post Office and mailed said birthday cards. Picked up lunch. Took the cold medicine and felt a little better. I swear, I cannot get rid of this congestion and sore throat to save my life.

Bonnie rescheduled Emery's clinic appointment for Friday as instructed the other day. Since we didn't need to be close to the hospital for any appointments today or tomorrow, and David will be back tomorrow afternoon, we packed up and returned to Katy tonight so they can be with their friends. We are nomads lately! We appreciate Becky and Sean taking us in for three nights and taking care of us while we went to those early morning appointments. It was so nice have a ten minute drive to the Clinic at that horrible hour!

Now we are back with Lauren and Dan. We were happy to see them, and Dan was especially enthusiastic to lug my overstuffed suitcase (which he has dubbed "Big Blue") upstairs again. I promise I didn't take everything with me and it should not have been nearly as heavy this time! We watched some snowboarding on the Olympics (Shaun White was amazing, was he not?!) Emery was reaching out and grabbing the toys on her little play gym--so cute! I don't think these weeks of treatment have slowed down her development much, if at all. She is really alert and communicative and seems very interested in everything around her. The home health nurse is coming out in the morning to change the dressing on her central line and we will pick David up at the airport in the afternoon. Hopefully we will get our report from the team and know what to expect next!

Tuesday, February 16, 2010

MRI and Naps

Today was another early one. Bonnie and I both slept through our alarms but managed to get up and ready and over to the hospital before 6 AM anyway. Emery was finally taken in for her MRI about 7:30. She is just the sweetest baby and was not fussy at all during the wait, even though she had not had anything to eat since 1 in the morning. She was full of smiles and just sucked like crazy on that paci while looking around the room or dozing off and on. She had to have anesthesia for the procedure, which is always a little bit of a concern, but she did just fine.

We got back to Becky's house close to 11 and had a late breakfast (after tea and pastries from Starbucks earlier!) Bonnie, Emery and I then crashed for a couple of hours. We had good intentions of getting out into the sunshine later but never made it. After dinner, we watched some of the Olympics and headed back to bed. We need to catch up on our rest!

Emery has been happy and alert and doesn't seem to have any ill effects from the anesthesia or anything else. Her nose is a little stuffy but that's been going on for several days. Otherwise, all is well.

I know everyone is waiting to hear the results of the CT and the MRI but Dr. Thompson told us that he really wants to meet with the whole team of doctors tomorrow afternoon before he can tell us what the updated plan will be. They will discuss the results and decide on the next course of action. Once we are fully informed by the team, we will happy to share the news and update you on the latest. As always, thanks for your positive thoughts and prayers for Emery and I will try to post all the results soon after we hear from the docs tomorrow afternoon.

Monday, February 15, 2010

A very early morning and a good day

Lauren's mom bought Emery this "First Valentine's Day" outfit. Emery says "Happy Valentine's Day" to everyone.

Today we were up at 4:45 AM and out of the house by 5:30. We were so proud of ourselves for arriving at the Clinic at 5:50 for Emery's 6 AM appointment. Unfortunately, the elevator would not take us to the assigned floor. The women at the desk informed us that it is locked till 6 AM, when a timer unlocks it, so we might as well have a seat and wait till then. Darn, we could have slept for 10 more minutes!

Today was CT scan day; sorry for the misinformation earlier in the previous post. We got our procedures and days mixed up somehow and were thinking it was time for Emery's MRI, but that's tomorrow. When we got checked in for the CT scan, the technician told us that Emery would have to drink three 2 ounce bottles of Pedialite with contrast solution in them. She had an hour and a half to drink one every thirty minutes. Bonnie and I just looked at each other because we knew there was no way this little girl would drink that much! We told the guy we weren't sure about that but he wanted us to try. Emery drank the first one in about 30 minutes and was fairly hungry since she hadn't eaten since 2 AM. She then went to sleep and was not interested in any more. Later, Bonnie tried again and she drank a tiny bit of bottle #2. The whole hour and a half went by without any more success. We called the tech and told him the situation. He came back in and said the doctor really wanted her to have all of the solution. Bonnie asked if he could just put the rest of it into the second bottle because we didn't think there was any way she'd take all three. He agreed and said we could have another hour if we needed it. Emery did wake up and finish off the second one eventually and we finally went in for the CT at maybe 9:30.

Not interested!

Emery did great for the CT scan. She was not asleep but didn't fuss or squirm at all. They swaddled her and had Bonnie hold her arms and talk to her while they sent her into the machine. They also projected some sort of psychedelic swirling outer-space themed light show onto the scanner to catch her interest. Some of the images were a little freaky. We figured an older baby might be scared but she was quite enthralled with the display. After the long prep period, the actual scan took no time at all. While Bonnie and I had to wear protective aprons and Bonnie was nearly leaning into the machine herself, the nurse counted down, "3, 2, 1!" and sprinted out of the room before the scan started. Kinda made us think about what we might be exposing ourselves to!
Then up to the Oncology Clinic for lab work. We were very excited that all of Emery's levels were very good and she was recovering nicely from the last chemo. In fact, good enough to be ready for the next chemo. Since she'd had trouble with her platelets for the last two weeks, we were very happy.
Oh, yeah, she also gained some more weight! She was weighed before the CT scan, so it was on a different scale and she had her clothes on, but even allowing for that, we think she gained about 5 more ounces! Yay, Emery!

Tomorrow morning, we will be up at the same time again and off for her MRI. We think we will have results for both CT and MRI sometime tomorrow.

Sunday, February 14, 2010

Sunday Night Quick Update and Happy Valentine's Day!

Hi everyone,

We've had a pretty quiet weekend, which was great! David and his brother Jonathan drove to Dallas on Friday night, stayed with Sarah and Miles (who were without electricity due to the snowstorm and were actually camping out at Miles' parents' house) and then on to Katy on Saturday. We were happy to see them and David was very happy to see his girls! David, Dan and Jonathan shopped for food and cooked a fabulous dinner for Lauren, Bonnie and me--very nice, guys! They also bought the biggest batch of candy we've ever seen! Oh, my gosh. We are on sugar overload but oh, what fun!

Emery has been happy and alert and interested in everything around her. She is a cutie pie and we are thrilled to see her growing and changing daily! Today Jonathan left early to fly back to Amarillo and David left this evening. We took him to the airport and then came back over to Becky and Sean's place in Houston. They just live a few minutes from the hospital and were gracious enough to have us come and stay with them for a few days since we have to be in at 6 AM the next two mornings. Dreading it!! I should be in bed right now, as a matter of fact.

Tomorrow Emery will have her CT scan (correction from earlier version of this post--we were confused!) so we are really hoping and praying that the tumor will be greatly diminished. After her scan, she will have more lab work done to make sure her blood levels are okay. Tuesday, we go back in at 6 AM for her MRI. Wednesday, Emery will be readmitted to the hospital to begin three more days of chemotherapy. It's going to be a busy week and we are optimistic that we will receive positive reports on all fronts.

Happy Valentine's Day to all--there's never enough love in the world so spread as much as you can. Wouldn't it be such a better place if we treated each other lovingly every day? Love, love, love to Rich, Sarah, Miles, Elle, Bonnie, David, Emery, Susan, Corey, Aidan and Ally...and the rest of my huge family...and all of my fabulous friends near and far who show their care and concern in so many ways. I feel very lucky and blessed. xoxoxo

Friday, February 12, 2010

More good news

We love seeing these big smiles!

"I love my Mommy!"

"Don't bug me--I'm sleeping!"

Holding that head up pretty well these days.

Aunt Sarah and Uncle Miles bought this play gym for Emery for Christmas. She was checking out all the sounds and lights today.

We got up early (for us!) to take Emery for her audiological evaluation today. One was started in the hospital but they weren't able to get it finished because Emery was moving around too much. Today she cooperated nicely and slept through the whole thing. We were excited to find out that her hearing is compeletely normal. The audiologist who did the first test was telling us that Emery might have a hearing loss in the high pitch range. We were not too happy about that so were quite pleased that the results today were completely fine. One of the side effects of chemotherapy can be a hearing loss so it's important to have regular checkups.

Sleeping away
Bonnie and I each had a banana on the way to the appointment. We were starving by the time we left and pulled into a "Steak and Shake" place to grab some lunch. We then realized it was only 10:45 AM! Obviously we are not used to being up early any more. Well, that's not completely true--Bonnie is up early feeding Emery but they often go back to sleep for awhile after. Anyway, we walked in and were offered breakfast or lunch menus so we took both just in case we still felt like having breakfast. But, no, the burgers, fries and chocolate shakes were calling our names. Does it count that we had healthy salads yesterday?!
This afternoon, we had excursions to Target and HEB before coming home and making taco salad for dinner. We are watching the opening ceremonies for the Olympics right now. I loved the fiddlers! Rich and I have traveled to British Columbia, Quebec and Nova Scotia, plus driving the Al-Can Highway, and have loved every single place we've visited.
So I think we will have a quiet weekend and that's good! David and his brother are driving in and leaving Bonnie's car for her; they are spending tonight with Sarah and Miles in Dallas and will arrive here tomorrow. I know Bonnie and Emery are anxious to see him and he is anxious to see them!
Back in Unalaska, it's the second night of the annual Channel 8 fundraising auction. I am sorry not to be there to help my coworkers and to bid on some of the cool stuff we had donated. If you are in Unalaska, be sure to watch the show, pledge your membership, and bid HIGH! This is the biggest fundraiser of the year for our little TV station. Even if you don't live in Unalaska, you can still become a member and support local community broadcasting by clicking here. Thanks!

Thursday, February 11, 2010

Happy Birthday, Elle!

Today is Elle's 2nd birthday. I talked with her this morning, though she would rather play than get on the phone right now. Here are a couple of photos that I did not get posted before I left Dallas--this is the train set that Rich and I gave her for her bday. She loved it and has had fun playing with all the accessories. The train was Sarah's idea--I never would have thought of it!

Elle's first two years have been so much fun for us, whether here for visits or hearing her stories from afar. She is smart, funny, and cute as can be. See her mom's blog for more photos and more about Elle! Happy birthday, sweet girl! We love you lots!

Wednesday, February 10, 2010

Drum Roll, Please!

In this corner, Miss Emery Jane Williams, weighing in at 9 pounds even! We were so excited to see the scale at Emery's clinic visit today!

I made it back to Houston last night. Bonnie and Emery picked me up at the airport and it was a funny ride back to Katy, with Bonnie and I both whispering and asking each other to repeat what was just said. Unfortunately, Emery has a little bit of the same crud and has been quite congested. She was very stuffy last night and had trouble nursing and sleeping because she couldn't breathe very easily. Poor baby.

This morning Bonnie noticed a rash around the site of Emery's central line so we called the clinic to report the rash and the congestion and to ask if we should come in early or just wait till the 1:55 PM appointment. The nurse told us to come on in so we had to hurry to get dressed and out the door. Arriving around 11, we waited a short time and then Emery was weighed, had vital signs taken, and blood was drawn for labs. Dr. Thompson came in and gave us the usual hard time. (He tells the rest of the staff that we are "the worst family" he's ever had to deal with and that we are lots of trouble. The other doctor today looked shocked that he would say such things right in front of us. I finally said, "He's just kidding--we are really not that bad!")

Emery's platelets were still low again today. Dr. Thompson was a little concerned about this, stating that it could be because she is sick and congested so her system is working hard to overcome all that's been thrown at it. Or it could be that her immune system is overreacting to the platelets and fighting them off instead of realizing that they are there to help. He decided to have us stay so Emery could get another transfusion of platelets (this was #4) but that they would also recheck her blood count after the transfusion to see if the platelet count was up immediately following the procedure. If so, that would mean that the platelets were doing what they were supposed to, but that she is just taking a while to get her counts back to where they need to be. If her platelet count was not good after the transfusion, that would mean that something was attacking them right off the bat and he would have to take another course of action to combat this situation.

Bonnie and I have become Pavlovian in our response to being at the hospital. We have conditioned ourselves to anticipate, crave and obtain a Chik-Fil-A meal every time we are there. I swear, we approach the driveway and I begin thinking about that darned chicken sandwich and fries. Not to mention the iced tea. It's crazy! We can't even remember how many Chik-Fil-A's we've had in the past month. So, yes, after getting all squared away and Emery prepared for another transfusion, we had to have our Chik-Fil-A lunch. I know I will never see another Chik-Fil-A without picturing Texas Children's Hospital and the Oncology Clinic. We should be their new spokesmodels.

Dr. Thompson and one of the nurses both looked at Emery's central line and felt that it was in good shape. The rash is most likely just a reaction to the tape that was used to hold everything down. Dr. Thompson also left Bonnie a message this evening that Emery's platelets did, indeed, improve with the transfusion so all's well and she just needs some time to get back up to a healthy level.

Emery did well with the transfusion and we finally finished up about 5:30 PM. Another long day, but at least it was not midnight or 1 AM before we got out of there. Coincidentally, one of Bonnie's elementary school friends from Abilene had notified her on Facebook (don't we all love Facebook and the way we can keep up with everyone and everything??!) that she would be in Houston this week. So before fighting the rush hour traffic back to Katy, we met Keleigh, her dad and a friend at a little cafe for a snack and lots of reminiscing. It was great to see them and to catch up on many years of family news. What a sweet young lady, now a mom of a cute little one year old girl herself. I know it's a cliche but I have no idea where all the years have gone since Bonnie and Keleigh played together as 8 year olds!

We have a very busy schedule coming up:
Tomorrow the home health nurse is coming to change Emery's dressing around her central line (but at least we don't have to leave the house).
Friday we have to take Emery to have her hearing evaluated at 9 AM. You might remember that they started a hearing test during her last hospital stay but were not able to get it completed.
Monday we have to be at the hospital at 6 AM (YES, 6 AM!!) for an MRI. Please feel sorry for us having to get up that early!
Tuesday, another 6 AM appointment, this time for a CT scan. Two days in a row!
Wednesday, Emery will be admitted back into the hospital to begin her 3rd round of chemo. She will have chemo on Wed., Thurs. and Fri. of next week.
Then we begin the post-chemo lab work once again. We are all getting a bit weary of the situation but know that we need to keep a positive attitude about Emery's care and all that she needs to get well. I am trying to figure out a good time to go back home and that is not clear to us yet. Bonnie and David will also need to make some decisions about how long to stay in Houston and when there might be a good time to transfer Emery's care to Amarillo so that they can get back to a more normal family life. We are hoping that all of this will become more evident after the MRI next week, when we know what the tumor looks like and when we will have a better idea of the next step in the treatment process.

Monday, February 8, 2010

How to Pass the Time on a Cold and Rainy Day

I hear there were blizzard conditions in Unalaska this morning so I should not complain about rain and cold in Dallas, but it was one of those days where you just don't want to go anywhere or do anything. We whiled away the hours keeping Elle occupied with lots of activities. Only a few are documented here! We made chocolate chip cookies and she was quite the helper.

Look at that face!
Wow, licking the beaters is one of my new favorite things!

Later we tried out Elle's new wagon from her Poppy and Grandma in Abilene. She loved riding through the house in it. Here she is jumping up and down, waving her arms and telling us "here I am!"

Some cute new animal stamps and an ink pad came in the mail today, perfect timing for an inside day.

We also played with the toy kitchen (making "meatballs" out of play-doh is one of her other favorite things), played with her new train set from Gigi and Grandpa Rich, dressed her dolls in Elle's clothes and shoes, watched a little "Dora, the Explorer," danced with Mommy, laughed and wrestled with Nash, and watched for Daddy out the window. Sarah made chili and I made cornbread for dinner--which hit the spot on a night like this.

Yes, I am still in Dallas instead of Houston. Saturday, I started losing my voice and thought it was just allergies. By Sunday it was worse and we thought I should probably see a doctor and make sure I was not contagious before being around Emery. We went to an urgent care place near Sarah's and I was diagnosed with a throat infection and laryngitis. The doctor asked me how much pain I was in, on a scale of 1 to 10, and I said "2." My throat really did not hurt much and I wouldn't have even gone to the doctor if it hadn't been for Emery's situation. After I said, "2," the doctor said she would prescribe me some pain pills! I told her (in my best Sarah Palin imitation) "Thanks, but no thanks." Seriously, pain pills? When I told Rich later, he asked, "if you'd said a '4' what would she have given you? Heroin?!"

While we were in the waiting room at the urgent care, Sarah called Bonnie and then started laughing because she said Bonnie sounded just like I did. Apparently, even with all our handwashing we managed to both come into contact with the same thing at the hospital. Since the dr. said I would be contagious for a couple of days, we decided I'd stay here and not double expose Emery. I changed my ticket to Tuesday, a little worried about Bonnie having to get up and get herself and Emery ready for a morning clinic appointment on Monday and an almost hour drive from Katy. Later we heard that David's flight home was cancelled due to weather in Amarillo so it all worked out and I am sure they were happy to have him stay a little longer.

Sarah heard from Bonnie earlier that Emery had a good check up in clinic today but needed more platelets so they had to stay for another transfusion. On the other hand, Bonnie doesn't have to give her the injections in her leg any more, so that was really good news. I didn't get to talk with her since neither of us has much of a voice, but it sounds like everything else is going fine.

Saturday, February 6, 2010

Elle's 2nd Birthday party

We celebrated Elle's 2nd birthday this evening, though her actual bday is still a few days off. Sarah decorated the house and set up a variety of play stations such as soccer, bowling, puzzles, bubbles, and a slide for the kids' amusement. I think there were over 40 people here and it was crazy chaotic fun for a couple of hours! Happy, happy birthday, Elle!

Miles went to pick up the cake and there wasn't one. Apparently, the bakery had written down the wrong date. He said, "My daughter's birthday party is starting in 30 minutes!" They managed to whip this up in no time. It was VERY pink but cute.

We were happy that Susan, Aidan and Ally were able to come celebrate with us. Corey had to work and, of course, we missed Bonnie, David and Emery as well.

Our friends Kirk and Dana came, along with their precious boy Daniel.

The slide was a big hit with all the kids.

Sarah and Miles with some of their friends.

Elle opening presents
Aidan was the only one who would sit with me and pose.

The kids had fun chasing big bubbles.

Little Ally sitting on the big stairs.

Elle looking at one of her new books.