Fourth Round of Chemo Begins

Rich sent me this picture of what I am "missing" at home. Yes, the snow is quite piled up by our house! Luckily, he can get in and out okay! What are the odds that this will be cleared up by the time I get home next week?!

Back here in Houston, we left the house at 10 this morning for an 11 AM appointment at the clinic. Well, the appointment was really for 11:45 but Dr. Thompson told Bonnie to come at 11 so we could get started earlier. We love our team and just about everything about Texas Children's but there are so many patients and so much going on that nothing happens very quickly. Waiting has become something we are very good at. I used to think I needed to practice patience and these last couple of months have given me ample opportunity.

We arrived 15 minutes early and both parking garages were full. After circling back around, we tried to valet park and were told that was full as well. The valet said we should go ahead into the parking garage (even though the "full" sign was illuminated) and drive around because there were some spots available. Apparently, they'd told lots of other people the same thing. It was a cat and mouse game, trying to figure out who was leaving and where they had parked, only to get there and find another car had made it before us. Once we even sat and waited for a car that looked like it was going to pull out any minute but someone behind us was not practicing patience and began to honk, forcing us to continue through the rows. Finally Bonnie spotted a family walking out of the building and drove the wrong way down the aisle to reach their spot. Then came the task of parking her 4Runner from the wrong direction in a tiny parking place next to a large cement column. I hopped out of the car to help direct her and waved a waiting vehicle past us so she would have more room to maneuver. Good job, Bonnie--she did it! Whew! By the time we got everything out of the car, walked to the elevators and made it to the 14th floor, it was 11:20. So much for being early.

We saw Dr. Thompson in the lobby and he asked the nurses to please get Emery's weight right away so he could start writing orders. Guess what! Baby girl is up to 10 lbs. 1 oz! We were very happy and so was the doc, especially since Emery's weight has remained the same for a couple of weeks.

The clinic was packed today--as always, lots going on. Labs were done and all of Emery's counts were good so she was ready for chemo. Dr. Thompson did an exam and thought she was doing great. We are still waiting for OT to get her on a regular schedule so he put in orders for someone to come see her while in the hospital.

Then the wait began for a room. David arrived around 3:30 or a little later and was very happy to see his girls. And they were very happy to see him! Emery was sitting up on his lap like a big girl. She just does not want to lie down any more than she has to and likes looking around at everything going on. She's also making a lot of cooing noises now and sounds like she just can't wait to talk! Bonnie was making little sounds and Emery would do her best to repeat them. So cute!

I think we finally went up to a room on the Oncology floor about 5:30 or so. They're all settled in and I left at 8:45 to go back to Becky and Sean's house. Chemo still had not begun. That's a bad sign for hitting the road at a reasonable hour on Saturday. Luckily, they have a bit of leeway on the chemo and can start it a little early each night as long as it is within a certain time frame. So we have not yet given up hope of getting out early on Saturday. We'll just have to see how it goes. Practicing patience.

Just Hangin' Out and Happy Late Bday to Ally

There hasn't been a whole lot to report, which in Emery's case, is a good thing! David stayed home this weekend to work on the house so it's just been the three of us plus Lauren and Dan, who continue to take good care of us.

Emery is getting busier and busier. Here she's reaching for her feet (that's her central line covered up on her leg). It was warm enough today to wear a more spring-y outfit. Bonnie and I are typically cold and keep running the heater upstairs while Dan and Lauren are sweating downstairs. (It's a wonder they haven't kicked us out yet). But today we actually turned on the air conditioner. It was sunny and humid outside and we considered taking a walk but everything else sorta got in the way and we never made it.

We can't decide if Emery is gaining weight or not but it's looking like she has a little bit of a double chin in these photos! What do you think? She's been kinda serious today but we managed to get a half smile out of her. She was happy through her sponge bath and enjoyed swinging in her swing for awhile. We are not quite sure where the hours go each day but we manage to fill them up without feeling like we have accomplished a whole lot. On the other hand, nothing is more important than taking care of this sweet baby girl.

The nurse has been by every day to change her dressing but the rash has completely cleared up and the nurse says it's all better. We get a day off tomorrow and don't have to mess with it till Emery goes back into the hospital on Thursday.

Yesterday was our precious granddaughter Ally's 3rd birthday. She was so cute when I talked with her on the phone and her mama said she'd been singing "Happy Birthday" to herself all day. We're sorry we couldn't see her and hope she had a lot of fun. We love you, sweetie!

Tomorrow we are going to try to drive back over to the outlet mall. I am so annoyed that my new jeans were washed one time (and never worn), coming out of the dryer with two holes in the leg. I suppose that's what I get for looking for bargains at the outlet. However, it looks like the store allows returns so maybe I can get some more.

Thursday Emery goes to Clinic and then will be admitted to the hospital for chemo. Dr. Thompson said she can go to Dallas after treatment if all goes well so we will be heading there when she's discharged next weekend. We'll spend part of Spring Break in Dallas with Sarah, Miles and Elle and the kids will also see David's sister Hannah and her husband Josh. They have a cute little boy named Grady and just welcomed baby sister Willow a few days ago. I know they are anxious to see Emery's new little cousin (and the rest of the family, too!)

I Heart a Good Bargain

Miss Emery had a very happy morning. She always wakes up in a good mood and is full of smiles. We love that time of day! Bonnie's dad and his wife were coming to visit this afternoon and I decided to go to the outlet mall to shop so they could have some time together. After a little confusion with my directions and trying to negotiate Bonnie's car with its huge side mirrors that block my view (I decided I am too short to drive a big vehicle), I made it to my destination. First off, a little lunch of fruit and cheese at Starbucks (who knew they had a fruit and cheese plate?) Now, it's not really that I am trying to be oh-so-healthy, but the choices at the food court were somewhat limited and it seemed the most appealing. The warm and sunny day was an added bonus since the stores are all outside. I think I enjoyed walking in the sunshine more than anything else. Finding lots of bargains was next on my plus list. I was surprised that the traffic was not bad and the outlets were not overrun with people. It was a very pleasant afternoon.

Of course, while I was gone, Emery decided to turn over by herself! We have been working with her and knew she was about to do it on her own. The little stinker couldn't wait for me??!! See Bonnie's blog here for a cute video of our girl showing what she's made of. Next, we think she is about ready to laugh out loud. She seems to be right on the verge. I told her she needs to do this at least once before Gigi leaves. In fact, I told her she needed to laugh for ME first and Bonnie took a little offense at that. :)

I don't think there's anything on the agenda tomorrow except another dressing change with a different nurse as our usual nurse is off. We'll see how that goes! Hope everyone is having a good weekend.

We love the occasional peaceful day!

After our busy week, it was nice to just relax at Lauren and Dan's house all day today. Emery was very happy and smiley all day, enjoyed her toys and didn't mind tummy time too much. I did take Bonnie's car and run to the Post Office to mail our gifts to Ally for her third birthday next week. Then the Home Health nurse came and it takes all three of us to do Emery's dressing change but she did really well today and did not get so upset. We had a very late breakfast and then the nurse was here so we finally ordered some lunch from Jason's Deli and I left the house to go get it at 4:00 PM. The traffic was already crazy! When I got home, Bonnie asked me if I got lost. No, it just took forever!

See Bonnie's blog here for more info about our week and the exciting fundraiser coming up for the cancer center over Memorial Day weekend!

This evening I talked with Alaska Air and booked my return ticket. Although I hate to leave Bonnie by herself during the week, she assures me she will be fine and she has some backup here with Lauren or my friend Becky if she needs an extra person to come along for appointments, etc. David will be with them for Spring Break and then we are hopeful that they will not have to be here too terribly long after that. So it's time for me to head home to my sweetheart of an understanding husband, my very patient boss and coworkers and my two kitties who have probably forgotten me by now. :) I'll drive with Bonnie to Dallas following Emery's next chemo and will fly out of DFW on the 17th, arriving home on the 18th. I'll miss spending my days with Bonnie and Emery (and David when he is here) and will miss my other kids and grandkids, whom I've been able to sneak in a few extra visits with. But it will be good to be home, too. For those of you who check my blog for updates on Emery, I will try to continue to post from Alaska as often as I have news to report. Bonnie is trying to blog as well but her days are pretty busy and she may not always have a chance to write so I will try to help out with that.

In the meanwhile, we still have 12 days to cover before I go so I am not winding down yet! Hope everyone has a good weekend.

No Hospital Admission!

We were in Clinic all morning and into the afternoon. Emery's leg looks better and the consensus now is that it is just contact dermatitis and no big worry. Her dressing was changed again and she did not cry as much today, thank goodness. Her labs were all good--no transfusions indicated, and no hospital stay required. It's the second time this week we've packed a suitcase and not needed it, but we are not complaining at all!

Everything's "all good" and we are on respite till chemo next week, probably beginning on the 11th and finishing on the 13th.

We just thought it was going to be a quiet week

Look who wants to sit up like a big girl!

So yesterday the home health nurse came to change Emery's dressing and had some concerns about a little rash/infection that's developed on her leg. We'd had it looked at in Clinic Monday and the doctor wanted daily dressing changes. When the nurse was here, Bonnie said that it looked worse than the day before. The nurse said she was supposed to teach us to clean and dress the area around the central line ourselves, which came as a shock to us. I guess that's insurance calling the shots--they probably don't want to pay for an RN to come out daily. However, Emery screamed the whole 30-45 minutes and it took all three of us to manage the ordeal. There's no way Bonnie and I could do this ourselves! We heard the nurse call in to her office, saying, "It took all three of us to hold the kid down!" LOL She advised calling Dr. Thompson, which Bonnie did. By that time, it was 4 PM and the clinic was going to be closing but he told us to meet him at the ER so he could take a look. Traffic was crazy but we are most grateful for the HOV lane, which cut off a lot of our time! We met up with Dr. T. and went up to the clinic, where we also ran into Dr. Javi, one of our favorites from earlier in Emery's treatment. He is always SO sweet to Emery. He got right down in her face to talk with her and then picked her up out of her stroller to carry her around the Clinic. Her doctors are just the nicest guys.

Anyway, we had three doctors and two nurses looking at Emery's leg, debating what was going on with it and whether she needed more intensive treatment. The nurses re-dressed it and Dr. T. prescribed some oral antibiotic. Emery screamed the whole time. She's getting pretty feisty, which I take as a good sign, but it is not fun to listen to her scream at the top of her lungs for an extended period of time (and twice in one day!)

We then asked what we were supposed to tell Home Health, since the Clinic nurses used different supplies and wrapped the leg differently. It was decided that we should come back to Clinic again today and have it re-dressed. Dr. Thompson said he is trying to avoid putting her back in the hospital but it may come to that if it doesn't start clearing up. Emery was pretty fussy all day yesterday and didn't seem to feel all that great.

We dropped off her prescription and were told it would be an hour wait, so came home, warmed up leftovers, watched a little TV and then Bonnie went back out to get the meds. Luckily, Emery had a pretty good night and slept fairly well. She woke up happy and smiley today, did some tummy time first thing this morning and then took about an hour's nap while Bonnie made us some chicken salad and I did laundry. After lunch, it was off to the Clinic again.

After more traffic, more waiting, more screaming while the dressing was changed, and an appointment to return yet again tomorrow morning, we steeled ourselves for the 5 PM traffic by driving through McDonald's for fries and chocolate shakes (don't judge us, it's been a stressful couple of days!) before heading home. We are loving the HOV lane, I have to say. I can't believe more people don't use it--thousands of cars with only one person in them....all backed up for miles and miles in the regular lanes. Thank goodness there are three of us! Emery fell asleep in the car so we stopped by Target to get Ally's birthday presents and a few things we needed, got home about 7, warmed up more leftovers, and now we are winding down another day. Dr. Thompson told us to pack a bag for tomorrow "just in case," so we are getting some things together. If Emery's admitted, we have no idea how long we'll be staying but we are packing light and remembering that there's a laundry room on the 16th floor.

In good news, our little miss is holding her head up so well that she hardly agrees to be held in a reclining position any more. She is all about sitting up and surveying the environment around her. If that head bobs a little bit, she doesn't care--she wants to be upright. Probably all the more reason she doesn't want to lie down on an exam table and deal with medical procedures!

If it's Monday, it must be another Clinic day

We set off for Houston for a 10 AM appointment for labs. Hard to imagine that there was still a bunch of traffic at 9:15 and 9:30 AM....what time do people go to work around here?! We still made it in plenty of time--we are getting pretty good at negotiating the various highways and exits and ins and outs of traffic. Emery was weighed and is holding steady...no gain, but no loss, so we are happy. Labs showed her red blood count to be low so we settled in for a transfusion. Thankfully, her platelets were fine. I think the transfusion finally got started about 2:30 PM and would take three hours. We can always find ways to while away the time and it is kind of peaceful in a way because we know we can't go anywhere so might as well just relax.

I talked with a woman whose husband once worked in Alaska and she says he has always wanted to return. She had lots of questions about where we live and what our life is like. I ended up giving her my business card and told her to call us if they ever came out. :) Her daughter was born with Cystic Fibrosis and after a lung transplant, developed lymphoma. They have been through so much, and meeting other families certainly makes us count our blessings. We also chatted with another woman whose mom lives in Amarillo and had heard about Emery. Small world, yes! Dr. Thompson stopped by (though it's not his Clinic day) and visited for awhile. He's always upbeat and tells us how great Emery is doing. We certainly like hearing that.

Of course, by the time we finished up, it would be rush hour traffic and we have learned that there's no point in trying to drive anywhere in it. We decided to grab some dinner first and eventually got home close to 8 PM. Even easy days drag out! We are grateful, though, that Emery is progressing so nicely and other than a complete cure right this minute, we couldn't ask for much more.

I got to talk with Aidan for a few minutes tonight and that always makes me happy. When he was in Alaska last summer, we had lots of fun playing card games like "Crazy 8," "Old Maid," and "Go Fish." I was in Target the other day and saw those games for $1 so sent him some replacements. He was thrilled and told his mama he wanted to play cards tonight. So cute. His sweet sister Ally is about to have her 3rd birthday so I need to find some bday presents for her. And our other little cutie Elle's latest escapades are documented by her mama here.

Rich has been busy back home, including providing a private food and wine pairing for the folks who were high bidders on the item at our Channel 8 auction. Check out our friend Steve's blog here for photos and a very nice commentary on the evening.