Justin Updates

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 Hospital back to Kaiser on Sunset for the remainder of his visits.  Justin went on Tuesday to see Dr. Sahebi at Kaiser.  She gave him the big green light!  He can go out to eat (no sushi yet) and go out without a mask when he’s comfortable!  He is going to go to the doctor every two weeks now instead of twice a week.  This is what we’ve been waiting all this time for!  I wanted to include in this post a picture of the amazing first meal he had at the house when he got the go-ahead to eat raw foods.  He’s been craving a big salad!  A big COLD salad!  So I made him a whopper!  I can’t seem to get the picture to upload… another day.  

The update on me is that I am not sharing in all of the fun — going out to eat, visiting friends, etc. — because I have pneumonia!  Crazy.  I’m getting over it, and will be home to celebrate soon.  Interesting how this life works, isn’t it?  

Love to all of you!  Love and gratitude!

xoxoxo,

Holly

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 from Justin’s insurance company for a while!  We are overwhelmed by your generosity and selflessness.  You (yes you!) are our favorite.

We would be remiss not to thank Julia Wilson as well, who set up a PayPal donation site for us months ago!!!  Thank you, Julia, and those of you who donated there.

AND there are more parties planned!  Check out www.thedutchparty.com for a city near you!  We’ll post photos and more info as we get them.

Justin is doing beautifully, by the way.  Today is Day 73 post transplant, and he is eating, gaining weight, walking around the block, riding his stationary bike, and visiting with… well, visitors!  If you aren’t sick, give us a call and come on by!  

Love,

Holly

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 be, so the doctors are happy!  Last week, Justin had his first bone marrow biopsy since the transplant.  We got results back this week, and they are perfection!  The sample came back disease-free and 100% donor cells.  Great news!  We are still just taking it one day at a time.  Thanks for all of the love and support!

Love,

Holly and Justin

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 visit when you’re healthy and have a hankerin’ for a chat and a lemon bar.*

Since everything is all about me, I should let you know that I am going back to work this coming Monday, the 27th.  Looking forward to it in a lot of ways, but I will worry about my patient.  Please check in on him via email, iChat, video conference, or telephone.  Ask him how many glasses of water he’s had and encourage him to have another sip.  It’s important to keep hydrated.  Thank you.

Love,

Holly

*My mom has been here this week, and made lemon bars.  I have never made them, and if I did, they probably wouldn’t be as good.  Therefore, there is a finite supply of lemon bars.  You are not guaranteed one upon visitation.

We’re checking out right now!

We’re having a pretty good day so far!  Counts continue to go up.  Continuing to try to eat small snacks.  Napping.  Laughing.  Wonderful.

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).  There are other special cells besides those white blood cells that help keep bacterial, fungal, and viral infections away, so while his wbc count is “normal” he is still very suceptable to infection and we must be vigilant!  He will also go home on immunosuppressant medications that help keep the new immune system from attacking Justin’s body.  Immune + suppress = desire to keep Justin as a bubble boy…

HOWEVER, we have gotten the ok to bring Justin home possibly as early as Monday!  We have the “Do’s and Don’ts” pamphlet from the discharge nurse already!  Justin is taking most of his medications orally rather than through the IV, and is really working hard to eat well.  He continues to keep food down, and we have found more things that taste ok.  Last night was meatloaf with bar-b-que sauce and a red bliss potato.  I ordered a muffin for Justin and ate it myself.  Kind of like stealing…  What a rush.

We are saying goodbye to Patty (Justin’s mom) today.  We are putting on a brave face.  We will miss you, Pats!  xoxoxoxoxoxoxoxoxoxo

Love, 

Holly

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 is one of the only organized group games that I like.  Way jealous.  Right now, Justin is sitting in a chair (not his bed) watching a little tv, Patty (his mom) is knitting, and I am typing to you!  

We didn’t get the counts for today, but I’ll let you know when we get them in.  I’m sure we’re above 3.0 now!

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 count is at 2.6 today!  His doctor prepping him this week for home as soon as possible!  We’ve got to get him off of IV meds, get him walking around and active, and get him eating!  His morphine drip is down to 1 mg/hour right now, and he will most likely be off of it entirely by tomorrow night.  He is in very little pain from his mouth, and the respiratory team are no longer seeing him for mouth care.  The only problem left with his skin is that he’s a little dry and flakey.  Tonight, he will receive his last IV antibiotic. He is trying very hard to nibble throughout the day, though he really doesn’t have an appetite.  He has been getting nutrition intravenously, and they are lowering that today from 100% of his nutritional needs to 80% to help his appetite.  The nurses have said that you kind of have to “teach your stomach” to digest and move food again.  It may be a little difficult at first, but Justin is making a great effort!  So far, orange jello is the staple of each day.  Vegetable broth and cranberry juice have been vetoed.  Most things taste wrong — it may take a month or two before his tastebuds are back to normal.  

After getting the ok from his doctor on Friday, Justin has been taking a (slow) walk each day.  Each day he walks a little faster and a little farther.  Today, we walked two laps around his floor!  He has had OT and PT (Occupational Therapy and Physical Therapy) today, and is currently in RT group (Recreational Therapy)!  He kind of got talked into going to the group…  I don’t know what they’re doing in there, but probably playing cards or something.  So, hopefully he’s being a good sport and playing nicely with others.  This is the most activity he’s had in three weeks, so I am hoping that this will also be the best night’s sleep he’s had in three weeks!  

Justin is allowed to have visitors at the hospital now!  He wears a special mask and gloves when he’s outside of his room, but don’t come if you’re sick, please.  Just give me a call or email either of us if you are around to stop by.  We’ll try and pry ourselves from our oh-so-busy schedule to visit with you!

Love,

Holly (& Justin, too)

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. They will just put a new one in the other arm tomorrow.

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, because his white blood cell (wbc) count was still at .2, which is basically nothing.  Today, his wbc count came in at a whopping .4!  His skin looks much improved, even from yesterday.  His mouth still hurts, but he seems to be less itchy.  As if to prove me wrong on that point, Justin is scratching right now, but… 

This is big news!  Justin’s doctor was very excited this morning.  She says she usually expects this kind of progress  around the 14th day post-transplant.  Justin is on day 11! We had every confidence that Justin would be amazing through this, and this is the proof. Thank you so much for your thoughts and prayers!  Keep it up!  You’re helping!

xoxo,

Holly

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 shower in about a week, but it was a short one.  He was worn out in just a few short minutes, and ready to get back to the bed to rest.  Today, he woke up and was feeling a little better.  We got him in the shower (it takes some prep work) and he enjoyed that hot water for 30 minutes!  He said it felt great on his itchy skin.  Now, he’s asleep.  I know that took it out of him.  Actually, he just said, “Pig brollers in her hair?  I don’t know, I don’t know.” He’s totally asleep.  A lot of funny stuff happens when he talks in his sleep.  Some days, he feels a little confused about what he dreamed and what really happened…  He has been asking if we have only been in this room, or if we went in other rooms and “did stuff.”  He asked me if my art show was at six…  No art show.  He is apparently doing a project on dinosaurs and checked out three books at the Summerville Public Library, entering through the old front door rather than the new side entrance.  He woke up and told me that he felt like he was in Chicago, even though he’s never been…  He felt like his bed was a ship…  Yesterday, he was just saying “crab boil” over and over.  Oh!  And he felt like there were cats in the room the other day.  Just, in the room.  Being cats.  He woke up after he shouted about “brollers” just now and is laughing because he realized he was talking.  He says there was more that he was going to say on the subject, but that he won’t tell me now. He says I am allowed to tell you the funny stuff he says.   

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.  Finally, the swelling from water retention is going down, and he no longer has a club for a right forearm.  When he realized that he could simply wipe his mustache off, Justin decided that it was time to shave his head.  The nurse did it with clippers, and she missed a few spots…  Justin continues to have mouth sores.  They are still painful, but the daily rinses, puffs, and breathing treatments help to keep them in check.  Thank goodness for morphine and ativan, which keep his pain tolerable and his anxiety low.  He is napping more now during the day, and his doctor encourages him not to feel guilty about just sleeping these days away as much as possible.  Last night he slept pretty well, and has been telling us about his fantastically colorful dreams lately.  Garrett, we hung out with you last night, apparently, and rode beach cruisers in Santa Monica while his hospital room was renovated to be a club suite.  Only Justin could have such lovely, positive dreams when his body is at its lowest point in this process.  Makes me love him more when I didn’t know that was possible.

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 has developed sores that make talking uncomfortable and eating unappetizing.  His stomach is all out of wack.  He is retaining water and looks a little puffy sometimes.  All unpleasant.  However, take heart!  The doctors say that these are all common reactions, and they know just what to do to help him to feel more comfortable while we ride them out/treat them with medication.  For example, he has a morphine drip to help ease the pain of the mouth sores (and anything else that may hurt), but he is also receiving a four-part mouth care routine four times a day to prevent more sores from forming.  He is receiving medicine to help the burning, itchy skin.  He has endless creams to help cool/numb the burning sensation (though he hates the way they feel).  He continues to get antibiotics to keep anything from developing.  His constant drip of nutrition gives him the calories, vitamins, and minerals that he needs.  He has not had any fever and his blood pressure is stable.  His cell counts have bottomed out, for all intensive purposes, and now we must just ride out this time, treating and preventing, until his cell counts start building back up.  

We are watching an HBO cops/bad guys drama on dvd that our friends Dan and Stephanie lent to us called The Wire.  I’ve been playing solitaire with our 3-D cat card deck and losing miserably every time.  I beat Patty, Justin’s mom, in a round of gin rummy.  (Sorry, Patty, but it’s true!)  I give Justin foot massages and ramble stories off the top of my head about past experiences.  We watch garbage tv shows and March Madness basketball games.  

This message was approved by Justin.

Love, 
Holly 

I think that quote is funny.  But it is not an accurate portrayal of your doctors, Justin.  I know.

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 been taking anti-rejection medications so that his body will be friendly to his new stem cells.  He will receive the infusion intravenously (through his IV) over the course of a couple of hours.  We asked his transplant doctor what to expect tomorrow, and she said that there would not be any immediate reaction.  Justin could experience the graft vs. host effect post-transplant, but the symptoms are treatable and many are what we’ve already experienced from chemo.  So, it most likely will not be fun…  But it’s a new beginning.  They actually call it your new birthday around here!  I like that.

As I’m writing this, Patty and Justin are joking around about how he needs to shower because he stinks (which he doesn’t), so the nurse is unhooking his IV for him.  He has a shower in his bathroom and a really amazing rubber cover that goes over his PICC line so it doesn’t get wet when he showers.  He just took some pictures in his room on his iPhone so I will post those for you.  See?  He’s doing very well.  

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.

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 handsome — his skin looks beautiful and he is growing an amazing mustache that would make his dad proud.  

Before they started the chemo today, they gave Justin a dose of Benedryl.  We were concerned because he is used to getting another medication that helps to relieve anxiety and just makes him feel sleepy and calm.  But the nurse said, “Have you ever had Benedryl 50 before?”  Justin said no, and continued to talk to her about his past experiences before chemo.  As he was talking, his speech got slower and slower and he began to slur a little bit.  The nurse and I just smiled at each other.  Then Justin said, “I think I feel this medicine,” and it reminded me of that terrible movie Old School when Will Ferrell gets hit with a tranquilizer dart in the neck.  We saw that part on tv in here the other day…  I’m rambling, I’m going to cut myself off.  Love to you.  Goodnight.

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 a day of rest today.  Tomorrow, Justin will have one day of chemotherapy — an IV drip for three hours or so.  So far, Justin feels nauseous from the radiation.  He is getting plenty of medication to help with his stomach and fluids to keep him hydrated.  He is taking preventative medicine for mouth sores from the radiation.  He’s still got hair on his head and face, and has not lost that much weight.  His attitude is nothing short of impressive — some moments are better than others, but he is still sweet and funny and charming.  Ironically, he keeps me going.

My employers are wonderful and have helped me to get paid family medical leave, so I am here with Justin until the end of his hospital stay in six weeks.  We are so grateful that Justin’s mom, Patty, is here with us.

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 like it’s Shakespeare!  Please feel free to pass this site on to anyone who asks for an update.  I hope this helps you feel connected.  Thanks so much for caring and checking in!  Love to you!  

Love,

Holly, the wife.