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)
We will ask about having guests.
— Holly
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.
