July 2009
1 post
Major Update
Hello!
Ok, so a major Justin update is in order! Last Thursday (June 25) Justin went for his Day 92 post transplant visit to his doctor, and was told that he could lift his food restrictions at home! He also had his picc line removed and had his final bone marrow biopsy (for a few months)! So, he has his left arm back! No more tubes! He’s free! We have now been sent from City of Hope...
June 2009
1 post
Many, many thanks, but not nearly enough...
Justin and I just wanted to post (if anyone still checks this) to say thank you many times over to everyone who planned, donated art, donated food, donated time, donated dollars to the many parties and art auctions since last Thursday! Atlanta, Los Angeles, Seattle, and Richmond! Roger, Will, Chris, Zach, Poketo, Gabe! The auctions were seriously successful, so now we won’t have to hear...
May 2009
2 posts
Ok, ok, ok!
An update! Here you go!
We are coming to the end of Day 42 post-transplant! I was able to go to the doctor with Justin today at City of Hope for his twice-weekly check-up. His white blood cell count fluctuates between the 4.0 and 10.0 marks, which the doctors say is totally normal. They say that he will settle in around 4-something, most likely. His other levels are right where they should...
April 2009
17 posts
Just to clarify...
Hello, internet!
Just to clarify, Justin is safely home. He is sleeping in his own bed. His appetite and ability to eat food increases every day. He comes downstairs and watches tv on the couch. He eats at the table. He is bald and skinny, but otherwise looks like the guy you know… He still sounds like the guy you know… He’s still the guy you know. Feel free to come...
Home!
We’re checking out right now!
On the right track
We’re having a pretty good day so far! Counts continue to go up. Continuing to try to eat small snacks. Napping. Laughing. Wonderful.
Light at the end of the tunnel
Hi!
We’re finally to the point where the end of the hospital stay is in sight! And not a moment too soon! Justin looks great and his wbc is above 4.0, so he’s within the range that us normal people live in, which is 4.0 to 11.0. We are still wearing masks and gloves in the room with him and he will wear a special mask and gloves when he leaves the house (once we get him home)....
Quick update
Hi!
Yesterday’s report: wbc up to 2.9! Mouth continues to improve, but not quite out of the woods yet with that… We will keep up mouth care ourselves (swishing with Biotene mouthwash and these Mycelex lozenges that are not yummy) to keep mouth sores away! Justin has continued to stay busy with OT, PT, and RT. Yesterday, he got to play the dominoes game called Mexican Train, which...
We're still here!
Hello, All!
Sorry it’s been so long since I’ve posted! Our ethernet was out for a few days, and while it’s great that you can post from your iPhone, it’s so hard to type with gloves on a touch screen! However, I think you’ll find that the update was worth waiting for!
Justin’s counts soar higher each day! Since last Wednesday’s post at 1.1, his wbc...
“We will ask about having guests.”
– Holly
Very exciting!
Yesterday, WBC count at .7. Today, 1.1! In the past, when Justin was outpatient after chemo, he would be allowed to see friends and eat in restaurants when his WBC’s hit 1.0. So, we’re doing great! Now we start looking for symptoms of graft vs. host (google it), which are uncomfortable but totally treatable. He has to have his PICC line removed today because his arm is tender around...
It worked!
For the first time, Justin’s bloodwork came back showing an increase in his white blood cell count! This is good news, because it shows his doctors that the transplanted cells are doing their job. His new immune system is working! His skin was beginning to look a little better yesterday, and he was telling us that his mouth pain was a little less. We wondered at how this was possible,...
“Those who dream by day are cognizant of many things which escape those who dream...”
– Edgar Allan Poe
One day at a time
Justin is feeling slightly better today. We continue to find ways to help his skin and make him a little more comfortable. There are some lotions and cremes that help. Justin usually HATES lotions, so these must be pretty helpful if he’ll let us grease him up. For the past few days, he’s been in the bed. Napping some during the days and watching tv. Yesterday, he took his first...
You give me fever...
Hi, everyone!
Well, it’s been two and a half weeks since we checked in at COH. The time is passing pretty quickly overall. Today is the first day that Justin has an elevated temperature, but it was bound to happen sometime. They treat it with Tylonol and put him on an additional broad-spectrum antibiotic. His skin rash is subsiding, though his heels and left elbow are still painful....
March 2009
19 posts
Dealing with side effects
Hi, everyone.
We’re dealing with new medicines and side effects. There are many reactions possible to the stem cell transplant, as well as separate side effects from the various antibiotics and antiviral medications. All of this wonderful science yields an uncomfortable Justin… for right now. His skin is reacting to something by turning lobster red and burning like fire. His mouth...
Just kidding...
I think that quote is funny. But it is not an accurate portrayal of your doctors, Justin. I know.
“And now, Doctor, we’ve done our work, so it’s time we had some play....”
– - The Red-Headed League by Sir Arthur Conan Doyle
Infusion Tomorrow
Hi!
It’s been pretty quiet around here the past day and a half. Yesterday, Justin was feeling well enough to walk around the 6th floor “sky lounge” on two separate occasions and even humored his mom and me by playing gin rummy. His cell counts are falling, which is what they’re supposed to do, so he is all prepped and ready for his transplant infusion tomorrow! He has...
Long day for Justin. Just doesn’t feel right… Neusea continues to rear its ugly head from time to time and he hasn’t eaten a bite since Saturday. It’s ok because we’ve got him on his first nutrition IV! And I took my first Ambien, and am typing with gloves on. What kind of mixed up druggie camP iS this ? SCene.
Benedryl 50
Today Justin had his first and final round of chemo for this hospital stay and forever! He received a four hour drip of a chemotherapy drug that I can’t remember the name of right now. Starts with an “E.” Needless to say, Justin feels pretty bad right now… He is sick to his stomach, his throat is dry, and he is just uncomfortable all over. However, he looks incredibly...
City of Hope →
City of Hope
Justin is checked into a most amazing place — City of Hope Helford Clinical Research Hospital in Duarte, CA. The facilities are incredible and the staff have been very kind. Justin checked in on Monday, March 16th, and began four days of radiation therapy on Tuesday. He endured radiation three times a day for 15 minutes each session with strength. He completed radiation on Friday and had...
“Attitude is a little thing that makes a big difference.”
– Winston Churchill
Hello, Everyone!
At the suggestion of many, I am going to try to post an update on Justin’s progress as often as possible for anyone who would like to check in. I have never been a “blogger,” so please be patient with me as I learn. But I think this will be a good way to keep you posted, as well as easy for me to keep up. The hardest part for me will be trying not to agonize over every word...