Sunday, June 28, 2009

Tour du Jour.

So today I am giving you all a sweet tour of Robert's hospital room. It's sure to be the most exciting part of you day. Get ready for some random! The picture above is the saying on Robert's bathroom door, right across from his bed, so he sees it all the time. I thought it was really cool that another patient had put it up for future patients to enjoy. I love it when someone does something like that for people they don't even know. The world is full of good, and good peeps. And that's a good thing.

This is our whole room from the doorway. Robert was sleeping. Isn't he adorable? Especially when he sleeps. ;D

He woke up! Only because I tempted him with a delicious bowl of Trix drenched with ice-cold milk. I have to make food sound ultra delicious, you know. Plus, I turn on the TV to sports center and he can hardly resist! I'm just that good. He is still eating well. No mouth sores or anything like that, so he is eating enough, which makes me a happy woman.

RobDob is still consuming these for a good portion of his meals. I am surprised he is still into them so much. Usually he gets sick of things when he gets done with a treatment, or starts a new one. Not this time. That sneaky Rabbit has got a hold on Robert's taste buds. I'll let him keep it. I think it's funny. The nurses always get a kick out of it too.

Here's my resting quarters. It's actually a little couch that folds out into a bed. It's pretty sweet. As you can see I've got our laptop and plenty of books to read. So I keep busy and entertained when Robert is sleeping, which has been quite a bit still. The radiation makes him sleepy. Kind of a good side effect if you ask me.

So Robert is still peeing in his urinal, but they also measure the dirty 2. I guess they want to make sure everything is looking okay and they know how much fluid is coming out. I think those things are more sensitive for a transplant patient. For his 1st transplant it took Robert quite awhile to be able to er, go . . . in the "hat", but this time he's like, yeah whatever, I'll show that turd who's boss! And he does. Luckily, regularly. Okay, okay. Enough of that. I know, I'm gross. But who doesn't enjoy a little toilet humor every now and again? Even if it is a little more literal.

Here's a look at the whole bathroom. As you can see they have a seat built into the shower. Super smart. Robert sits in the shower no matter if there is a seat or not. (I know, it's weird. But we still love him. Don't we?) I don't use his bathroom, ever. It's a rule. One I am quite used to, so I trek out to the ladies room outside the clinic, since I am a respecter of the rules. Luckily it's not too far.
This is the view from our room window. Not too shabby, eh? We're glad we will be able to see fireworks on July 4th. That will be fun. I love when it rains here. Really anywhere. It's fabulous, and a nice change from the Vegas heat.

Robert has his last day of radiation tomorrow. Excitement! He might have to get a couple more treatments on his leg, but the TBI will be finished tomorrow. Then he is getting 2 days of chemotherapy. He is extremely happy that radiation will be done tomorrow. They showed me the radiation room today after he was finished. The contraption that they have him standing in/on does not look fun. Super uncomfortable. I wish I had had my camera to take a picture. Maybe they will let me take one tomorrow. Robert is feeling pretty good, and doing well with everything so far. Thank you for the comments, love, and prayers! Please keep them coming.

All our love.

Friday, June 26, 2009

Trix... I mean tres

Image courtesy Joy Argento

Today was day three for Robert. He is still enjoying his Trix cereal, and said something that made Ashley laugh. She asked him if he was hungry and he said no. Then she clarified and said "You don't want any Trix." Robert said "yes..." and then he said "I had a Trix yesterday."Ashley was a little confused, so Robert said "I had a Trix during my treatment." Ash asked "Stuck on your gown?"
Robdob replied "Yes it was going through h*** with me."
It is a little sad that Robdob is going through this again, but I always admire that he does it with an amazing attitude, and still manages to make us laugh. His third round of radiation was this morning at 7 am. It went smoothly and, after that, Ashpants and Robdob were able to get some r&r. He is still very tired so he slept quite a bit, but when I spoke with Ashley he was watching a funny movie. It was nice to know that some things stay the same, Robert loves to laugh too.
Tune in again tomorrow for a brand new episode of Robdob, and his sidekick Ashpants!!

Thursday, June 25, 2009

Day 2

Today was a long day for Robert. This morning he had his Hickman catheter put in, also known as a triple lumen. He will have this catheter in his chest the whole time that he is in Salt Lake. This afternoon he had his second round of radiation, and it went well. It only took an hour and a half, which was a big improvement over yesterday. Apparently since it was his first round of radiation it was more time consuming, it took three hours. He has had some itchiness because of it, and it makes him very tired, but so far so good. Unfortunately his headaches continue to bother him, and he had to get IV liquids yesterday because he was getting dehydrated. We are really hoping that those pesky headaches will stop bothering him soon, there are other things he should get to focus on. (like his adorable, incredible wife, and eating whatever his heart desires)
Both Robert and Ashley are holding up well. We are so grateful for the incredible care available for Robert, and for all of your love and prayers. Thank You!

Wednesday, June 24, 2009

Popsicles, and one step closer.

Hey everyone! Robert got admitted to the Bone Marrow Transplant wing at the University of Utah Hospital today. He will be receiving his first round of radiation today around 4:30. He will have 6 days of TBI(total body irradiation), and 2 days of chemotherapy following that. He is a little nervous for the radiation, since he has never had it before. Overall though he is feeling pretty good. I'm sure you're all wondering whats with the popsicles? Well, in the last week we have eaten a couple of big boxes of these babies. There are these slow melt popsicles that are delicious. At first I was skeptical, but then I read the box and found out that a little bit of gelatin is what keeps them from melting fast, and it gives them a smooth texture. We love em'. Robert is also a huge fan of fudgsicles. I prefer the fruity route. Also... anyone who knows some excellent food options in or around the Salt Lake City area, please let us know. We are always looking for new good eats!

It was fun to get to hang out for a while here before Robert got admitted. I got our apartment set up, and we just relaxed. We didn't go much of anywhere, because those dang migraines are still plaguing Robert, since his lumbar puncture. Luckily they are getting better. Hopefully non-existent soon.

Cheers to getting Robert's treatment going! We are excited to be getting closer step-by-step to being done with Robert's treatment. So many miracles have happened over the last couple of months. It is amazing that Robert is getting his transplant in itself, considering how sick he got his last hopsital visit. It is a testament to all the prayers, and fasting that all of you do for him. We are so blessed. Robert wants me to especially thank you for all the comments you left in his "waiting room". He loved hearing from all of you. It is amazing to know we have friends all over, pulling for us. It is so nice for us to read your encouraging words. In the hospital especially, it becomes kind of our own little world, and at times we feel so secluded from the rest of the world. So please keep the encouragment and support coming. It means so much to both of us. Now that Robert has started treatment, me or my wonderful sisters will try to post everyday to let you know how he is doing. Please continue keeping him in your prayers. We are staying positive and know that he will pull through this strong. Thank you again for all that you do, it does more for us than you'll ever know.

All our love.

Saturday, June 20, 2009

Captain Morgan

As promised in the "Favorite Things" post earlier this week, here's a picture of RobDob in his new hat.

One day when Robert was home between Salt Lake trips, he sported the lovely new straw hat his mom bought him and enjoyed a little soak in the pool. He calls this his "Captain Morgan" pose. :)

Daisy got some pool time, too.

Robert and Ashley arrived in Salt Lake Thurs. afternoon. The only bad part of their trip was that Robert got a migraine on the way. He's continued to get headaches since the lumbar puncture. The radiologist told them how the radiation would work and that they would make a custom shield for his lungs to protect them during the radiation. The Dr. also said that the headaches would have to be under control before the radiation could begin. So, they went to the ER that night to work on the headaches. He got a couple bags of fluid and some medication for the headaches.

When they're not at the Dr. or hospital, Robert rests and eats. Ashley cooks for him and is working on getting them unpacked and settled into their temporary home.

Wednesday, June 17, 2009

Donning Their Capes

Early Thursday morning, our super heroes will don their capes and return to Salt Lake City--this time, it will be for 100+ days. This call to action came in Tuesday evening.

Thursday at 1PM, they have an appointment with RobDob's radiologist to talk about the treatment plan for the bumps on his leg. Based on what Robert and Ashley know at this point, he will first receive radiation on his leg bumps to kill the leukemia cells. Then, he will receive about 5 days of full-body radiation and a couple days of chemo. After that, he will receive his second bone marrow transplant.

Our super hero's sister (and hero!), Amanda, will once again be Robert's bone marrow donor. The biggest difference between this bone marrow transplant and the first one will be that this time the doctors will not give Robert anti-rejection medication as early on as they did during his first transplant. They will wait--probably until after he shows signs of host vs. graft disease.
Based on my understanding, the blessing of Robert getting host vs. graft disease is that once Amanda's bone marrow takes over in his body, her marrow will recognize leukemia cells as the enemy and kill them if they ever start to grow again. Because Robert didn't get host vs. graft disease with the first transplant, Amanda's marrow didn't build up an immunity to Robert's leukemia cells. (I hope I don't have to edit and correct this info later on, but that may happen because my knowledge about host vs. graft is somewhat limited. If you know better than I, please leave a comment).

From what we hear, super heroes are not exempt from the miseries of radiation. So, please continue to keep Robert in your prayers.

Monday, June 15, 2009

RobDob's Favorite Things

Ashley's home cooking,
And video games with brothers.
Sleeping in his own bed,
And his pillow full of feathers.
Snuggles from Daisy,
And a new hat for his head...(picture of him wearing it will post in a day or two)
These are a few of Rob's favorite things...

While RobDob plays the waiting game (for all of last week's test results), he is definitely enjoying a few of his favorite things.

The only other test result that's in is the biopsy of the bumps on the back of his leg. They are indeed a grouping of leukemia cells. It concerns the docs a bit that the bumps are there even after his last two rounds of chemo. Robert and Ashley are looking forward to getting the rest of the test results because after those are known, the doctors will be able to devise a treatment plan.

Robert and Ashley are enjoying their time back in Vegas, although Ashley is wishing there was a more solid plan so she knew whether or not she should be packing right now for their 4-month stay in Salt Lake. Robert has been getting headaches off and on from the lumbar puncture he had this past Thurs. Ashley said that aside from the headaches, he is feeling pretty well. He got a massage from Karalee today. They've spent a lot of time at his parents' house--hanging out with Daisy and his siblings who are out of school now and always available to entertain Robert with video games.

Thank you for your continued love and prayers--they are Robert and Ashley's most favorite thing at this time.

Thursday, June 11, 2009

Homeward Bound

Ashley and Robert drove up to Salt Lake on Monday. As I write this, they are homeward bound after spending Monday through today at the Huntsman Center for Robert to undergo the testing necessary to chart his treatment plan. He went through all the tests that Ashley posted about a week ago.

The cardiologist visited with them this morning before they left to return home. The results from his heart test are the only test results that have come in so far. As far as his heart is concerned, he is cleared for a bone marrow transplant this summer. They were grateful to get that good news before returning home.

As more test results and Robert's treatment plan become known, we will share them here. So, stay tuned. Welcome home, Robert & Ashley!

Wednesday, June 10, 2009

Superhero Fans in the Waiting Room

Wow! What amazing superhero fans there are in RobDob's waiting room. Thank you to all who have commented on the last post so far--keep the comments coming! I know your prayers, thoughts, and encouragement mean the world to our superheroes.

Only a true superhero could be as tan as RobDob is even after a 5-week stay in the hospital.

Ashpants and RobDob sharing some love after the baby blessing this past Sunday.

Ashpants showing off her hot new shoes. Her super boots needed a break.

We had a wonderful and eventful weekend enjoying time with family. Robert and Ashley had a graduation party with the Ashworth's, and Josephine's baby blessing. After the blessing we had a delicious meal at the Squires. Unfortunately they left on Monday so they missed out on the actual graduation ceremony for Brittany and Alycia. I am sure they were crushed.

I spoke with Ashley briefly this morning and she said Robert's testing is going well so far. He had already gotten a lumbar puncture and was scheduled for his bone marrow biopsy at noon today. That was his last big test, and I believe his final test is tomorrow morning at eight. They will head home after that, and they are excited to come home again. Even if it is for just a little while. I will post again tomorrow once I know how everything went. We love you all.

Saturday, June 6, 2009

RobDob's "Waiting Room"

Since Janelle is on maternity leave from posting to this blog, I get to take a turn! I am Ashley's oldest sister, Kristin.

I have a friend here in Texas who has practically lived at Texas Children's Hospital so far this year with the Down Syndrome baby they adopted in January. Her situation reminds me of all the time Robert and Ashley have spent in the hospital since his November 2007 diagnosis.

This friend of mine updates her blog daily to keep those interested in her daughter's progress informed. One day she wrote a post sharing an interesting statistic she learned from a show she had listened to. The guest on the show shared that the number of people sitting in the waiting room for an injured or sick patient receiving care in an Emergency Room had a direct correlation with how the patient fared and recovered. Those with few or no friends or family in the waiting room didn't do as well or recover as quickly as those with many friends and family in the waiting room. The support in the waiting room is like a lifeline and motivation for the patient to pull through and recover.

My friend figured that her blog is like the door between their "Emergency Room" (the hospital) and the "Waiting Room" that is cyber space. She requested that everyone reading her blog leave a comment so they would know who is in their cyber waiting room.

Let's do the same for Robert. We know there are hundreds of you in Robert's "Waiting Room." Let him know you are there. He's got a lot ahead of him the next few months, as you may have gathered from Ashley's post yesterday. Perhaps he'll fare better and recover more quickly if he has a concrete idea of exactly how many people are pulling for him and cheering him on as he continues his super hero battle with leukemia.

Please take a moment to leave a comment. Feel free to comment anonymously or just using your first name--whatever you're comfortable with. Thank you for all your love and support. It means so much!

Robert Update: He and Ashley arrived home from Utah safely last night and are enjoying a weekend surrounded by family (and no doubt some delicious food, too). Robert will get to participate in the blessing of Janelle's baby, Josie, tomorrow.

Friday, June 5, 2009

Fasting & Prayer Invitation.

Hi Everyone. Robert and I are just getting ready to leave SLC. He didn't get any testing done, they want us to come back early next week for all the testing. His BMT doc is concerned that Robert still has the bump on the back of his leg, which they think is leukemia cells growing there in his tissue. He doesn't want to be dealing with super-resistant leukemia. So next week Robert will be getting that biopsied, he will also be getting a bone marrow biopsy, a lumbar puncture, blood testing, echo cardiogram, and a special heart test(I'm forgetting the name of it). Robert had some heart damage in the ICU, which has looked a lot better since. But, they want to make sure it will be strong enough for radiation.

I am requesting you fast with us this coming sunday for the results of all Robert's test to allow him to receive his transplant and be the best that they can. I am also hoping you will all pray with me until he gets all of these tests done. I know many of you pray for Robert everyday, but if you could include these test results it would be grately appreciated. I know they all make a difference. We are staying positive and hoping for the best. Thank you so much. All our love.

Wednesday, June 3, 2009

Off to Utah.

Robert and Amanda when they were youngins. How cute is this? 

Robert and I are heading back to Salt Lake City again early tomorrow morning. We are going to meet with Dr. Boyer so he can check Robert out, do some tests and make a game plan for Robert's treatment. Amanda is also coming along, so they can do some tests on her as well to make sure she is healthy to be Robert's donor again. I will update you with all the news! As always, thank you for your prayers, your love, we are so grateful. All our love.