Sunday, January 31, 2010
Last night several members of Dan's and Lauren's families came over, bringing enchiladas for dinner, and we all had a lot of fun visiting. Today we had to take David to the airport so he could go back home for the week. I know he was sad to leave and Bonnie was sad to see him go. It won't be for too long since he will return on Thursday to spend the weekend with Bonnie and Emery but I know it will be hard for them to be separated. Right now, the plan is still to return to the Oncology Clinic on Wednesday and Friday.
Since David will be here this weekend, I am taking the opportunity to go back to Dallas for Elle's 2nd birthday party. I can't believe that baby girl is turning 2! Although I am not happy about the reason for my extended stay in Texas, I am glad I am having the chance to see all the kids and grandkids more than usual. Hopefully Susan, Corey and kids will also be able to come to Elle's party so I can see all of them, too.
Bonnie and I played with Emery and relaxed for the rest of the afternoon--we have been pretty lazy, other than baby care, which can take up a lot of time in itself. Bonnie says we need to get into a routine, starting tomorrow! We are hoping for warmer weather so we can go out walking every day, get some exercise, fresh air, and (hopefully) sunshine.
Friday, January 29, 2010
I talked with Bonnie this morning and all was well; they had a good night and were waiting for the nursing agency to come by Lauren's house with the supplies they will need for giving Emery's injections. I'm happy they are out of the hospital and that Emery seems to be feeling no worse for wear after the last chemotherapy.
It was nice to sleep in this morning and I did a little bit of work for my job, which has suffered while I've been gone, but I am most thankful for the best boss and coworkers EVER who have not tried to make me feel bad and have covered everything that needed to be covered. And I also want to thank my friends back home who have volunteered to help with making calls for donations of goods for the auction, along with sending up lots of love and emotional support. I miss y'all and you are really amazingly wonderful. :)
Becky and I ran some errands today and went to Central Market, which is like a candy store to those of us who don't live in the land of the giant gourmet supermarket (oh, if only Rich had been here--we might still be browsing the aisles!) Also went to Michael's, where I bought some yarn and needles so I can try to get back into the knitting thing. Becky helped me with some tips last night and I am anxious to actually accomplish something instead of constantly tearing out and starting over. Watch out, Unalaska Tuesday Night Knitters' Club!
Thursday, January 28, 2010
Now the dressing on Emery's central line is being changed and Dr. Alok, one of the residents, just came by to say hello. Emery has won the hearts of everyone who has seen her even one time and they all like to pop in and see how she's doing.
Bonnie and David "get" to learn how to give Emery a shot today. She has to have one injection a day for several days to help build up her blood counts. Since she will not be staying in the hospital, her parents have to know how to do it. They are certainly getting a new kind of education throughout this journey with Emery. They will probably be discharged this evening and then will come back to the Oncology Clinic next Wednesday for a check up and labs.
We hear there's lots of snow in Amarillo and school was cancelled today!
Wednesday, January 27, 2010
It was a little shocking to see so many children in the clinic, knowing that they all have one form of cancer or another. Most of them were sitting patiently next to their IV poles, reading or playing games or talking with their family members while waiting to go into a treatment room. Most of them receive outpatient chemotherapy. We are grateful that Emery is going to be in the hospital for her chemo so she can be monitored, especially since one of the drugs will be different this time and there's no way to know how she will respond to it. Some of the younger kids were crying and upset--one little boy did not even want his blood pressure taken. I imagine they begin to associate the clinic with lots of things that they do not particularly enjoy. In some ways, it is probably a blessing that Emery is so young and does not know what's being done.
Chemo should be starting any time now. The nurse practitioner said that Emery could potentially be released tomorrow if all goes well, but that's not certain till we see how the chemo affects her. She also needs a hearing test, just part of the protocol, so she will have to stick around till that's done. We love our precious girl and hope and pray that this will be a quick and easy hospital stay.
Tuesday, January 26, 2010
Said bye-bye to the Clyde/Abilene kids, grandkids and friends last night and Karen drove me to Weatherford to meet Sarah, who drove me back to Dallas. Elle was already in bed when I got there. When she got up this morning, I heard Sarah say, "Guess who's here?" When she told Elle, "Gigi," Elle started saying, "No Gigi, no Gigi, no Gigi!" Sounds like I have joined the list of things that Elle does not like: jackets, sunglasses, bath, school (Mother's Day Out, which she used to love!) and now Gigi! Funny what an almost two year old decides to get stubborn about. Of course, she got over it very quickly and we were buddies. She did go to "school" for part of the day so Sarah and I treated ourselves to pedicures and ran a few errands. The nail lady asked me if I wanted my eyebrows waxed. You could tell from her expression and the tone of her voice that she was sure I needed it. Now this is something I do once in a blue moon and usually don't care or worry about how my eyebrows look! But I said, "I guess so; I probably need it, huh?" and without hesitation, she said "YES." haha
We met Miles for lunch and then picked Elle up from school. It was a sunny and fairly warm day so we went to the park for awhile and she ran and played with great enthusiasm. Some 6-7 year old girls were doing cartwheels on a little hill and came over to talk with Sarah and Elle, who was happily running up and down. I thought it was so sweet of them and they were probably telling Sarah how cute Elle was or asking her age or something. But no, Sarah said they asked her to please move because Elle was in their way. WHAT?! How rude is that?!
Then we had to have a snack so went to a gelato shop that we like and I had my favorite caramel sea salt flavor, which Elle shared with me. Back home for dinner, packed up and off to the airport. Loved, loved, loved having time with my other girls, guys and amazing grandchildren over the past few days. They are all just the best. :)
I didn't finish this before we were called to board so now I am sitting at my friends Becky and Sean's house and about to go to bed. Thanks to Sean, who has become my private chaffeur since I have been staying with them--he picked me up from the airport tonight. I'll be meeting Bonnie and David at the clinic at 9:30 AM. Please continue to send up love, prayers and positive thoughts for Emery's next chemo treatment to be smooth and easy for her and her parents. It sounds like they all had a good day again today and I know they are enjoying the freedom of being out of the hospital and in the company of friends. See Bonnie's blog for more.
Monday, January 25, 2010
Today I slept in a little bit and caught up on some work. I was supposed to attend a retreat this week for the Healthy Native Communities Fellowship and had several tasks to do for that, even though I won't be able to make it to the gathering. It felt good to get those done and out of the way. Susan picked me up for lunch and we met Karen at Hickory Street Cafe, one of our all time favorite places. Then they both went back to work and I have been finishing tasks up on the computer at Karen's.
Karen is driving me back to Weatherford when she gets off; we will stop in Clyde to say our goodbyes to the kids and then hit the road. Sarah will meet us and take me back to her house for the night, then on to Houston tomorrow. I talked with Bonnie and all is well with little Miss Emery. We are very thankful!
Sunday, January 24, 2010
Karen and I had fun with Aidan last night. He is such a good little boy. He played with some cars and worked on rearranging all the furniture and decorations in a big doll house of Karen's mom's. We chatted about school and friends and his Alaska trip and all sorts of things and he drifted off to sleep. Karen and I always stay awake way too late when we are together, trying to solve all the world's problems. 8 AM felt a little bit early this morning! We met up with Susan and Ally and our friend Kelly and her daughter Audra for lunch--so great to see them and we were happy that Ally no longer seemed to have any tummy issues. She has been fine all day; unfortunately her Daddy apparently came down with the same thing, bless his heart.
It was a balmy 50-something in Abilene (yes, that seems downright warm to Unalaskans!) so Susan and I took the kids to the park to run and play for a while. Then out to their house in Clyde for a few hours of hanging out, and back to Abilene to meet up with our other friends Jim, Sherri and Diana, along with Karen, and out to dinner. Yes, we eat out way too much when we are traveling. I love seeing my good friends whenever I can and they are always such a great support through thick and thin.
The kids headed home since it's a school and work day tomorrow. I talked with Bonnie earlier and she said they are having a relaxing time and Emery is happy and smiling. Hurray! I noticed that Bonnie and/or David posted on their blog so you might want to go here to see more photos and read their thoughts. I know they are very touched by the outpouring of love and concern everyone has shown them and their precious baby.
Saturday, January 23, 2010
This morning we hit the road for Weatherford and my friend Karen met us there to bring me the rest of the way to Abilene. We had a good drive and caught up on news from all sides. Then got together with Susan, Aidan and Ally and spent the day having fun with them. Aidan is even taller and is doing great with spelling and reading some words. Not to mention that he is still the cutest and sweetest boy around! Ally is so lively and a darling girl with shining eyes and a cute little laugh. We played and played and then went to meet Corey, Karen, Kaci and Jason for dinner. Ally started complaining that her tummy was hurting so I held her for a little while and then she went to her mom, sitting on Susan's lap facing her. She acted like she was feeling better but then began to complain again. I had no sooner said, "I hope she is not going to throw up," when she started vomiting in three huge waves all over Susan and the restaurant floor. Oh. my. gosh! We could not believe it. Bless both their hearts, they were covered in it. Not exactly what you want at the dinner table. We rushed her to the bathroom and cleaned her up; luckily, Susan had another set of clothes in the car for Ally but nothing for herself. Needless to say, they took their food to go and headed home. We are not sure what came over Ally as she had been playing happily all day. Hopefully it is not anything major and she will be fine tomorrow.
Aidan came to Karen's house with me and is spending the night with us. We love having him and getting to spend time with him. Karen helped us with him when he was a baby and has always been like another grandma or *at least* an auntie to him.
As far as Emery news goes, I talked with Bonnie this afternoon while we were in the car and she reported that they had a nice, relaxing night with Lauren and Dan, rested pretty well, and they had Emery on her tummy, playing, when we were talking. It sounded like everything was going great at that time and I have not heard any more so I am counting on the fact that all is well! I don't want to call them constantly and drive them crazy! I know some of you are just checking the blog to find out about Emery but there may not be a lot of new info for the next few days. And that's a good thing!
Friday, January 22, 2010
Emery will be discharged today and all three will move in with their friends, Dan and Lauren, till next Wednesday, the 27th. Emery will not have to come back to the hospital for any interim treatment or monitoring so they will get to have a relaxing time with their friends and concentrate on being a family for a few days. On the 27th, they will bring Emery back in through the clinic and we think she will be readmitted for for just ONE day of chemo. There is also the possibility that she could be treated on an outpatient basis, but because she is such a "peanut," as Dr. Thompson calls her, he thinks they will probably put her in the hospital. We will all feel more comfortable if they admit her, too.
After that, Emery will need to be monitored for awhile to make sure she's okay and that the chemo is having the desired effects on the tumor. We will probably get to leave the hospital but will need to stay in Houston for anywhere from 10 days to 3 weeks following the end of chemo. We were glad to get a definitive timeframe because we've been operating on one day at a time for the longest and it was hard to make any plans. At least this way we have some idea of what will be needed for Emery to have the best possible outcome. David will need to head back to work at some point so I will stay with Bonnie and Emery for any time that he can't be here.
In other big news today, you know that we have been concerned about Emery's feeding and weight. She has definitely been eating better for the last couple of days. She was just weighed and the whole room burst into spontaneous applause when we heard that her new weight is 3.91 kg! I'm not the best on measurement conversions, but Bonnie says that is about 8 lbs, 4 1/2 oz! Yippee! We are all very excited that she is gaining weight!! Bonnie deserves a huge pat on the back for nursing and pumping like a maniac. She has been so dedicated to making sure that Emery has had good nutrition and every opportunity to eat and grow.
Emery received some more blood this morning to get her up to maximum benefit before she checks out. She's been happy and smiling and so much more like her sweet little self for the past couple of days. We are all thrilled.
I am making a quick trip to Dallas/Abilene to see Sarah, Susan and families and my friends while Bonnie, David and Emery are in Katy. They assure me they will be fine for a few days so I suppose I can give them a break from Gigi. :)
As always, we appreciate your thoughts and prayers for our sweet girl. Have a good Friday and a good weekend!
Thursday, January 21, 2010
A nurse came in to teach Bonnie and David how to flush out Emery's central line with saline and administer heparin through the line to keep it from clotting off. Otherwise, she's going out on no meds and no major issues so they get to just be parents for a few days without all of the complications of being in the hospital.
Since the chemo was moved up (because she's doing well, not because they are worried about anything), David will just stay here till the second round is finished. If they don't have to bring Emery back and forth to the clinic for anything during this interim period, they may go to stay with their friends Lauren and Dan in Katy, TX (not too terribly far from here). If they have to be running back and forth, they might go to the Ronald McDonald House instead. We are not quite sure of all the arrangements yet.
I moved over to my friends Becky and Sean's a few nights ago and they have been so kind and gracious, driving me to the hospital, picking me up, feeding me and doing laundry, etc. They've been a lot of fun and it's been good to catch up after all these years. I really appreciate them so much for taking me in and taking care of me!
We've had so many visitors in the hospital, friends of friends, pastors from various churches who have a connection with Bonnie and David through family and friends, doctors and nurses who are related to or know other friends of the kids'--so sweet! We were surprised yesterday to have a visit from my dear friend Karen's brother, Ken, who is with a church in Alvin, not too far from Houston. We appreciated him making the trip over to check on us. I have not always been here when others have stopped by and there are too many to list without worrying about leaving someone out, but we hope all of you know how much your visits have meant to us. Thank you!
So it seems like little Miss Emery is on the upswing and we are feeling really happy about the way she is progressing. Hopefully this short respite will do all three of them good and they will get rested up for the next go-round of chemotherapy. Thanks again to all of you for your love, support and prayers.
Wednesday, January 20, 2010
Sorry for the delay in this update. The past two days have been a little hectic. We have still not met with the oncology team about the results of the MRI and other tests. They came by earlier but David was in the shower and Dr. Thompson said he couldn't visit with us without David! These guys love to give each other a hard time. Anyway, we thought they'd be right back but that was hours ago and they are off on their rounds elsewhere. We are hoping they will be back soon and fill us in with more details. The neurosurgeon stopped in last night and told us that the good news is that the tumor has not grown. We were hoping for really exciting news that it had diminished quite a bit in size, but he felt that it had not changed. However, he said it was stable and that we should "be encouraged, not discouraged." I have to admit that we all felt discouraged in spite of his desire to put a positive spin on the results. This morning one of the residents told Bonnie and David that the radiologist had measured the tumor size and compared it to the previous MRI, reporting that it actually HAD diminished a bit. So that made us a lot happier. As I said, though, we are still waiting for the big boys to come back and fill us in.
Emery also gained a little bit of weight and seems to be doing better with feeding. We are giving her bottles of breast milk with a little bit of fortified formula mixed in, along with her regular nursing time. Bless Bonnie's heart, she spends a good deal of time nursing or pumping for bottles. She is a trooper, just like her baby girl. Bonnie and David have been just amazing and I am so proud of both of them.
The dietitian for the cancer service also stopped in to talk with Bonnie about the feeding issues and was reassuring about different steps they can take to improve Emery's intake. We've had a couple of visitors and Bonnie is actually out with her friend Lauren for a brief respite right now. I'm glad she's having a small break from the hospital. David has fed and held Emery and I am doing some laundry and running little hospital errands.
I am going to close by including part of an email that David sent to Amarillo High last night. Some of you have already seen it but I thought everyone else might like to read something from Emery's Daddy's point of view. Here's David:
We have been in Houston now for 10 days. Here in Houston, Emery has been through three rounds of anesthesia, 2 MRIs, 1 surgery, 2 bone biopsies, 2 bone scans, 4 EKGs, over 20 x-rays, over 70 blood pressure-readings, at least 20 needle-stabs, 3 days of chemotherapy, 6 rounds of GCSF, 3 bags of blood, countless bags of fluid, 8 rounds of morphine, 8 rounds of 2 different nausea-drugs, 7 tubes of sensi-cream, probably at least 100 blankets, and one knawed-down passy. She has had as many as 14 lines coming off of her, fevers, half-days of no food, the worst diaper-rash some of the staff here has seen, awful constipation, and annoying parents. She is one tough cookie. Momma and Daddy are trying to be tough stuff, but we have had a few rough patches. We had to go three days without holding her or nursing her during the period that she went into surgery. They had to get a good biopsy, which was actually pretty complicated because of the tumor's poor real estate. Those days were really hard on us, but a little harder on Momma who couldn't nurse. It is pretty tough to see her hurt. Every parent knows how hard that is. Today was a pretty big day, because they did another MRI to try to measure the progress of the chemotherapy. We were able to talk to the Neurosurgeon team a few hours ago, but haven't gotten to talk to the oncologist team yet. Mixed emotions. According to the neurosurgeons, the tumor has stopped growing, but hasn't shrunk yet in the spinal canal. It is really good that the tumor has stopped growing, especially when one considers the size of the tumor. Based on the size, it is reasonable to assume that the cancer was aggressive, thus the fact that it appears to have stopped translates to tangible progress. Bonnie and I were really hoping for a big decrease in the size of the tumor, so it was actually a pretty tough blow to us hearing that is was still such a presence in her spinal column. We also know that the news could have been much, much worse. The general idea that the neurosurgeons conveyed is that it wasnt all they were hoping for, but better than it could have been. They also said that each tumor is different-genetically. Some take more work, and that might be what we are looking at. I hate to ask any more of you all, but I really want to ask you all to keep praying if you can. Emery sure does need prayer. The specific things, besides the fact that we want all cancer out of little Emery, are the location of the tumor in her spinal canal and her weight/nutrition. Getting her to eat has been a battle because of all the different things going on with the chemo. The doctors aren't comfortable with her nutrition levels or her weight-gain, and neither are we. We really appreciate the prayers. I want to thank you all again. Bonnie and I have been blessed so much by all of you.
Tuesday, January 19, 2010
Emery and her parents had a pretty good night and got some decent rest. Emery's temp was up a little bit but she slept well for the most part. Her MRI was scheduled for 7 AM but the nurse came in to say it had been moved to 10 AM so Emery could go ahead and nurse at 5. She can't eat within several hours of the procedure. They gave her some blood this morning to help build her up. Her temp was normal before the MRI. A whole slew of doctors and other medical folks came in late this morning and had a big discussion about everything that's going on. Some were residents and others in training so they had to go over everything with Dr. Thompson (her primary oncology doctor). Dr. Thompson and David are constantly teasing each other and trying to outdo each other with quick comebacks, so that keeps everyone laughing and in good spirits.
The docs are still a little concerned about Emery's weight and want her to gain some more. Unfortunately, it took forever for her to finally go down for her MRI--it was almost NOON and she hasn't eaten since 5 or 5:30 AM. We were a little frustrated by that since they want her to EAT and then they won't LET her EAT! Crazy! Poor baby will be starving by the time she is finished. Anyway, she's in having her MRI right now and we are sitting in the waiting room having sandwiches and grapes and feeling bad for our hungry little baby.
We probably won't have results for awhile but I will post something as soon as I can.
Monday, January 18, 2010
We thought she was having an echocardiogram (just routine) today but nothing's happened with that so far. She's scheduled for an MRI early tomorrow morning so please send up prayers and positive thoughts that it will show that the tumor is smaller and away from her spinal cord.
The 9th floor seems more quiet and peaceful than PCU and Emery has a bright, cheerfully colored room. We put her on her tummy and helped her work on holding up her head and turning it from side to side. She didn't enjoy it too much and it wore her out! Dr. Thompson said he doesn't want her burning too many calories on developmental skills but that it's okay to have a couple of short sessions a day. We don't want her to fall behind because she's in the hospital!
Right now she is sleeping comfortably in her mother's arms, wearing a darling purple onesie that says "too cute." We all definitely agree with that!
Sunday, January 17, 2010
January 18th also marks 5 years since Rich and I got married. We had kind of a crazy long distance relationship for a few months and then I packed up and moved to Unalaska. Some of my Texas friends thought I had lost my mind. My friend Jim even said, "You don't know how many other women he's lured to Alaska and buried in the ice somewhere." I think he was only halfway kidding. At that time, none of us were familiar enough with Unalaska to know that there's very little, if any, ice! Originally I wanted to come back down south so my girls and my good girlfriends could be present with me at my wedding--OR I wanted everyone to come to Alaska. With airfare being what it is, the second option soon disappeared. For awhile I still held out hope that we could have a wedding somewhere that all of our loved ones could attend but it just started seeming less and less feasible. One day we were discussing what to do about getting married and it suddenly hit me that my big wish was not going to be very workable. So we decided we would just have a simple ceremony at the courthouse in Unalaska. I was working at the Community Center at the time with a rotating schedule. Rich asked, "When's your next day off?" I said, "Tuesday." It was kind of a happy synchronicity that Tuesday was my Mom's birthday as well. We had a couple of days to plan. Went and got a marriage license. Started looking for rings. Could not find any that we liked. Who wants to spend a fortune on rings you don't even like?! We then decided we would buy anything just to have a ring for the ceremony and would get something better next time we traveled. It then became a funny little adventure. We almost bought "mood" rings but I couldn't find one to fit. We then settled on a $3.50 thin band for me (that was too big and kept falling off) and a weird looking tiger head ring for Rich. We were cracking up.
Because I couldn't have my girls, I decided I didn't want any "bridesmaids" (which sounds a little silly when you are 50 years old, right?) so we just asked a couple of Rich's coworkers, Willie and John, to be our witnesses. We did not want to have a big deal so we did not invite anyone else. The day of the wedding, we couldn't find John anywhere, so at the last minute, we asked another of Rich's cooks, Ceasar, to fill in. My Texas friends sent us a big vase of flowers, from which I picked a few to make a small bouquet. Off to the courthouse we went and John rushed in at the last minute. In the blink of an eye, we were married. As we walked out of the building, we were surprised by several of my coworkers and a bunch of the Kindergarten and 1st grade after-school kids. They had filled our car with balloons, painted the windows and tied cans to the back bumper. My coworker Terry put a fuzzy tiara on my head and one of the little girls started singing "here comes the bride, all dressed in.....brown??..." I was wearing a beige skirt and jacket and she thought that was very odd.
The following weekend, we crammed a crowd of people into our duplex for a little reception. Such fun! Five years have just flown by and we are still having a big ole adventure, whether sitting in the living room reading, enjoying community activities in Unalaska, or traveling across the country together. Life is good every day. It was a major leap of faith for us but the best leap of faith I've ever taken. Thanks, Rich, for a happy, peaceful life. I love you!
Emery had a shot in her leg and didn't even wake up. She is a tough cookie! Her weight is holding steady so that's good news. We are having a fairly quiet and relaxing day so far. Well, it's not quite as relaxing for Bonnie because she has many Mommy duties but at least it has been a pleasant day.
Saturday, January 16, 2010
I didn't see any doctors but I understand that Dr. Thompson said they will do an MRI on Tuesday, sort of a compromise between himself and Dr. Curry, the neurosurgeon. Dr. Thompson was willing to wait a little longer but Dr. Curry wants to see it sooner rather than later. Dr. Thompson also wants Emery to get a little more feeding time in. Otherwise, it sounds like everything is going well.
Bonnie and David got back just as we were getting ready to give Emery her bath. They had a great time with their friends and I know it was good for them to have a break, get to visit and laugh and put some of their worries aside for a little while. Gigi came back by to say hi and then went to get us all some iced tea from Chipotle's across the street (the food court is closed on the weekend! What a disappointment! I was looking forward to their tea all day!) We thought she was getting herself something but when she came back, she just had drinks for us. What a sweetheart--but we felt bad! David and Bonnie fixed her up a little "work kit" of snacks and goodies they had in their room. I left it with the front desk clerk, who called her up and said, "Your Gigi twin just left you something." They were also talking earlier about how cute David is. When he walked up, one of the clerks said, "OH, THAT'S the one you've been talking about?!" I think he has some girlfriends on the 7th floor. :) Everyone at the hospital has been super nice and helpful but we do have our favorites, I have to admit.
All in all, a very good day; baby just needs to eat a little more and everything will be great. I am hoping they all get a good night's sleep tonight. I'm going in at 9 AM tomorrow so Bonnie and David can go back to bed if they've been up a lot during the night, so will be able to post an update earlier...maybe....
Keep our sweet girl in your thoughts and prayers. She is a fighter and we continue to be "relentlessly positive."
Some college friends are stopping in to visit today so I am staying at the hotel and trying to catch up on a little bit of work while they are at the hospital. It gets a little hectic and crazy with too many people in the room. If Emery is doing well and Bonnie and David feel up to it, I'll go up later to stay with Emery while they slip out for dinner with their friends.
Here's hoping that Emery has a great day today and we continue to be relentlessly positive, as Dr. Thompson says. :)
Friday, January 15, 2010
Emery has had some really great nurses who have gone overboard to make sure everyone is comfortable. We appreciate that so much! Dr. Thompson just came by late tonight and apologized for seeing Emery last but he said he knew she was doing well and was in good hands. I think he just wanted to end his day with this sweet baby. :) He is so supportive and very encouraging to Bonnie and David. He said tonight that he is "relentlessly positive." I love that!
Rosanne and I have still not been able to get into the Ronald McDonald House but we are fine with sharing a hotel room and the folks there have been very kind. We know the van driver well by now and the front desk people have been so understanding about us having to figure out every day if we are staying or leaving.
Today I was able to get together with an old friend of mine and her husband. Becky was the dietitian at Providence Hospital in Waco when I was a social worker there about 31 years ago--yes, 31! I moved away when Sarah was just a baby but Becky and I have been "Christmas card friends" for all these years, catching up on each other's news at the holidays each year. She has a beautiful daughter in college and a cute son in high school and has lived in Houston for awhile now. She and her husband Sean picked me up from the hospital and took me to their home for a fabulous lunch and a little relaxation this afternoon. It was great to meet Sean (who writes a hilarious Christmas letter) and to hang out with Becky for a couple of hours. If we are in town awhile, she promised to help me to learn to be a better knitter. :)
Sweet dreams, Emery. Have a peaceful night, baby doll.
Thursday, January 14, 2010
She's also off her IV now...more good news. She's had a bath and is wearing one of her own cute little nightgowns tonight.
The hospital is like a mini city of its own. There's a free laundry room on the 16th floor which we tried out tonight, well, mostly David's mom did the laundry, but I did go look at it and hand her a few things to throw in the washer. Rich will be shocked to hear that I did not take over the laundry since that is one of my addictions. He thinks I do laundry way too often at home. There's also a food court. Now maybe I am a hick but I have never heard of a food court at a medical center. But it's really nice to have something right here if you don't have time to go out. I have to admit that I have had Chik Fil A for lunch three days in a row. Bad habit. And I can keep my iced tea craving satisfied. Lest you think we are being completely unhealthy, we have lots of fruit and good stuff from Whole Foods stored in the fridge on the 7th floor.
Anyway, things are really good here; Emery looks great and seems like herself for the most part, other than an occasional fussy moment. We are all feeling very optimistic and upbeat about her progress.
She's such a sweetie and we are still amazed at how well she has handled everything that's been done to her. We love our baby girl so much and everyone who walks in the door falls in love with her, too. :)
Wednesday, January 13, 2010
It sounds like Emery will be in the hospital at least through mid-week next week (but that is very tentative and could change at any point). Then perhaps stay here in Houston outside the hospital and wait for the next round of chemo. That all works out to several weeks but none of it is carved in stone right now.
Amarillo High Student Council has started a neat project called "Jump on the Emery Chain." Kids can buy a paper link for a dollar, write a message on it, and add it to the paper chain that will be stretched through the hallway at school. We are so touched by these wonderful students and their caring hearts. We have to say again that we have been blessed by many, many fabulous people who have reached out to support Bonnie, David and Emery in so many ways, too many to count, and we want you to know that we have noticed and appreciated every single call, email, text message, gift of time, money, food, offers of places to stay, and everything else. Even if you have not heard from us individually yet, please know that we are very grateful and you are all in our hearts.
Not much else to report right now. We don't seem to have a photo card reader with us so we have to get one before we can post any photos...sorry....we thought we had one here. She's looking really good and mostly like her old self except her legs are still a little chubby from the fluids and steroids. :)
Thanks again for all the love and prayers. More later if anything changes--if not, I will post tomorrow.
Tuesday, January 12, 2010
Everyone's tired so we are heading out. Good night, all!
Emery had a fairly peaceful day. They did some sort of kidney test but we don't know the results yet. Still don't know the bone marrow results either. But the doctors basically said that, regardless, the treatment would continue as planned.
I am sitting in the PICU waiting room, which has become our second home lately. Sometimes it's really full of people and sometimes it's fairly empty, which is the case right now. There are about 20 recliners around the perimeter of the room where family members and friends can sit or lie down and sleep. Yes, many people end up spending the night in here, which would not be my first choice but it would certainly be a blessing if we had nowhere else to go. There's a Ronald McDonald House on the 4th floor of the hospital but you have to sign up for a chance for a room every day and there are not enough rooms to go around. Not everyone can afford a hotel and maybe some people just want to be right here close by if they are needed. We have a little kitchen, a couple of TVs and tables and chairs. Some of us are literally "camping out" with all of our belongings, snacks, water, etc. Bonnie and David have been fortunate to get into the Ronald McDonald House the last few nights but you only get one night at a time so have to move all of your stuff out every morning. Then you sign up again and hope you get picked and move back in again. Not the most convenient thing but probably the most fair. Once everyone is out of the rooms at 11 AM, they clean everything up and you can sign up to go back into one of the rooms for a nap or a shower. The kids have taken advantage of that opportunity, too. We were told that Rosanne and I might be able to get into the off site Ronald McDonald House for $25 a night so we are waiting to talk with a social worker about that. I am interested to see how the social workers do things here since I used to have a semi-related job. As you can imagine, I have lots of questions. :)
Okay, sorry for the delays but I have been working on this all day and every time I think I am ready to post, someone else comes to see us. We did meet with the social worker, who was VERY nice (yay social workers) and helped us apply for the Ronald McDonald House. Unfortunately, there were no rooms tonight but we will go on a waiting list and start calling every morning till we get in. The good thing about this off-site house is that once we're in, we can stay up to 45 days. None of this in-and-out-every-day thing that the kids are having to do. So we hope we get in soon!
Sunday, January 10, 2010
Emery's in the PICU so only two visitors are allowed in at one time. I finally got to see her last night after she recovered from the day's procedures, had Mommy and Daddy time, and got fed. She was really swollen and puffy from all the fluids but otherwise seemed to be feeling okay. It's pretty shocking to see our precious little baby hooked up to lots of monitors with cords and tubes coming out of various parts of her body. She looked so tiny lying there on her back in the institutional type crib. Her eye is still only partially open, which they think is due to the tumor pressing on a nerve. Luckily the MRI showed that there was no tumor behind or near her eye so hopefully that will resolve in time. She was alert and responsive, watched us when we were talking with her and later was able to be taken out of her crib for Bonnie to hold her and nurse her (she'd been taking bottles of breast milk till then--Bonnie gets to go to the "Milk Bank" and pump regularly). I know they were both happy for this time together. Sarah, Rosanne and I also got to spend some time with Emery and stayed at the hospital till almost midnight. David stayed in the room with his baby girl overnight and said she had a pretty rough time last night with tummy troubles and fussiness so we are glad Daddy was there. He was one tired dude today, though, and got to go to a "nap room" and rest for awhile.
Today has been fairly quiet on the medical end; Emery had a chest Xray and we are awaiting results of that. Otherwise, I think they have let her have more of a restful day. She is not nearly as puffy and looks more like her real self again. She had a little fussy period but mostly has been content to lie in her bed and sleep or watch us while we talk with her and keep her company. One or two of us are with her at all times and don't want her to go for a minute without someone who loves her. Sarah has been a huge help and a big support so we were sad to see her leave tonight but she has her own little girl who needs her at home. We are just thankful she was able to come.
Lauren showed up with bags and bags of delicious healthy food from Central Market--what a great friend she is! I can't tell you all the calls, emails, texts and messages we've had from so many people--it is very heartwarming to know all the love and concern and prayers that are coming our way. Thanks to all of you! We've had so many offers of assistance in every possible area and appreciate it immensely. So far we are all doing fine and keeping a very positive and upbeat attitude about everything. The docs are very encouraging about Emery's prognosis.
We still don't really know what the overall plan is going to be. A lot depends on how well she does with the round of chemo (two more nights--tonight and tomorrow night) and how she responds. Part of the concern is that the tumor is close to her spine so they are planning to shrink it with chemo and maybe avoid surgery, but surgery is still an option if the chemo does not do the trick. They feel hopeful, though, because there's still some cushion space between the tumor and the spine so they don't feel that it's quite as urgent to do something invasive yet.
We had a new nurse tonight and she let me hold Emery for about 30 minutes after she bathed her and changed her bed. I was thrilled! She went right to sleep and we just sat quietly for awhile. Her other grandma came in and claimed her turn so I *reluctantly* handed her over. :) We are taking shifts with Bonnie and David tonight so everyone can get a little bit of rest. Hopefully the next chemo will go okay and Emery will not have a tough time tonight. I will try to do better about updating daily if I can. We also might have some photos to post next time.
Saturday, January 9, 2010
I believe it when people say that days can go by in a blur. I can't remember what happened which day and what I've told to whom. The information and treatment options and recommendations kept changing day by day, almost by the hour sometimes. Yesterday it was decided that Emery would be transferred to Texas Children's Hospital in Houston. She and Bonnie were care-flighted out late last night; David and his mom took a regular flight to be there as well. Sarah flew in today to be with them. I am on my way, sitting in the Anchorage airport waiting for my next flight at 1:30 AM--from here to Salt Lake City and then on to Houston, arriving Sunday afternoon. Meanwhile, baby Emery has already been through all kinds of medical intervention, including a biopsy and placement of a port for chemotherapy, which was scheduled to begin tonight. There is concern about the neuroblastoma being close to her spine so the doctors want to shrink it with chemo and then maybe do surgery. Although I worked with babies and kids with medical problems and disabilities for years, it's a totally different feeling when it's one of your own. I can't imagine what Bonnie and David are going through as parents if I am feeling this terrible as the grandmother. It's such a helpless feeling to know that that precious little girl is having to undergo major medical treatment at such a young age and there's not a thing we can do about it but wait and watch and pray.
The good news is that she seems to be tolerating everything well at this point--they say babies are resilient and able to to get through it better than older kids and adults. For that I am extremely grateful. My lighthearted blog, my year of elevation, and posts about cats and weather and Unalaska happenings is taking a turn for the most serious as we put all of our energies toward Emery and her treatment and recovery. I will be staying with the kids as long as they need me and am very thankful for a kind and understanding husband as well as a fabulous employer, coworkers and friends who have stepped up to help with a looming fundraiser that's really my responsibility. It's true that an emergency situation will show you who really cares and who really will stand by you and support you. What a fortunate family we are that we have all just been showered with care and concern and love and support by more people than we can count.
Please keep Emery in your thoughts and prayers as we embark down a new path.
Tuesday, January 5, 2010
So I started working on elevating my health and wellness yesterday by having some good ole oatmeal for breakfast, fruit for lunch and Rich's homemade bean/veg soup for dinner. I really feel much better when I eat healthy and definitely need to drop a few pounds. Now if we can just get ourselves back to the gym.
As you know, I started taking piano lessons a few months ago. Between my own and my teacher's schedules, I think I missed more lessons than I actually attended. Then she was out for several weeks. Then we went on vacation. I almost feel like I will be starting from scratch when we get back together this Thursday. My biggest issue is that I will not make myself practice! I had to go to the community center to practice and scheduling was always a problem. My friend Karen in Abilene plays piano and I was giving her all my excuses when she jumped right in to say she had a roll up keyboard that I could use! We packed it in our suitcase and brought it home with us. So no more whining! I finally got it out yesterday--here's the proof! And, yes, I actually practiced for about 30 minutes before going to work. I took a few photos of one of my hands on the keyboard but, oh my gosh, I couldn't post any of them. Okay, I did not realize how horrible my knuckles look. I swear, they are getting that old person crooked, bent appearance. I was shocked. So, no, you do not get to see them.