Ryan has been seeing his oncologist at MaryBridge in
1) He was transplanted under one of their clinical trials, led by Dr. Laurie Burroughs, using Treosulfan (a chemotherapy drug not yet approved by the FDA).
2) He has some issues with GVHD that they are monitoring.
3) We are local to the
area so, logistically, it is somewhat convenient.
Shortly after receiving his donor cells, Ryan developed acute skin GVHD. The doctors also suspected some mild gut GVHD at that time, but his symptoms were never severe enough to warrant an intestinal biopsy to confirm. He was started on high dose steroids and also received PUVA, a UV light treatment, for his skin. He was tapered off the steroids fairly quickly because he had a bad psychological reaction, plus the PUVA therapy worked well to put the skin GVHD into remission.
Although Ryan currently remains free from signs of skin GVHD, symptoms of possible gut GVHD have flared up. His appetite is almost non-existent. Most of the time, he just doesn’t feel hungry, but other times, he feels nauseous. Food sometimes looks and sounds good to him, but he will take a few bites and be done. The smell of food is also bothering him. He has been averaging about a 1-2 pound per week weight loss.
In addition to the appetite symptoms, the eosinophil count in Ryan’s blood has skyrocketed. A high eosinophil count generally indicates inflammation and can be a sign of GVHD. A normal eosinophil count for someone Ryan’s age should be less than 300. Last week, his was over 6,000!
Unfortunately, it is looking like an intestinal biopsy and another round of high dose steroids are probably in his near future. This is bad for several reasons:
1) On steroids, Ryan goes away and is replaced by a boy who is very unhappy, unreasonable, and extremely challenging to deal with. I have a video clip from when he was first put on them in the hospital and it is not pretty! It’s like a scene from The Exorcist.
2) Among other things, high dose steroids cause bone loss, high cholesterol, high blood pressure, and greatly increase the risk of infection.
3) Steroids make him itchy and could spark a flare-up with his skin again.
We are over a month into the school year and I think we have finally come to an agreement on a plan with the school district. They originally offered a limit of 2 hours of tutoring a week under a home hospital plan. I pursued a 504 plan instead, and we are now up to 6 hours a week of tutoring, materials to be provided by the classroom teacher weekly for us to work with, and the option to Skype with the classroom and possibly Skype with an older 5th grade “reading buddy”. However, if Ryan is put back on the steroids, I am not sure how this is all going to work out…
I have always been a bit of a germaphobe, but having a child with no immune system, along with the media’s coverage of Ebola and Enterovirus D68 have really kicked my OCD into overdrive!
During Ryan’s last appointment at SCCA, I jokingly told them I felt really paranoid about germs and that I thought maybe I was starting to go overboard. They looked at me very seriously, and said “Oh, no, we made you that way. You HAVE to be that careful.” I realized they were right. A common cold is an annoyance to most people, but to a transplant patient it can be a potentially fatal event, or on a milder scale, can put a transplant patient in the hospital on a ventilator.
Here are some things that the average person probably doesn’t think about, that my family has to deal with every day:
- Avoiding people as much as possible; you never know who might be sick, even if they don’t show symptoms yet! We are basically still living in isolation as much as possible. Except for appointments, Ryan only stays at home or goes to grandma’s house while I am at work. For appointments, Ryan wears a mask except when in the exam room with the door closed. He is even getting paranoid and told the social worker last week to get away from him (she had a cold and was wearing a mask).
- Ryan’s sister has to stay at her mom’s house if she has any cold symptoms or has been around anyone that has cold symptoms (this is a struggle because she has asthma and allergies so it is hard to tell when she has a “real” cold).
- Brad and I limit our own exposure to the public so that we don’t get sick and bring it home to Ryan. This is another challenge because Brad is self-employed working with the public, and I work in a large building with about 500 other people, several of whom travel internationally on a regular basis and are probably exposed to all sorts of things on airline flights.
- We have to keep Ryan away from sources of bacteria, fungus and mold: No house plants, all fruits and veggies have to be scrubbed thoroughly (including banana peels if he is going to touch them), Ryan has to wash his hands anytime he pets the cats, the cats cannot sleep with him (we have to keep the door to his room closed 24-hours a day), and the list goes on…
Among other things, we have to wash our hands and/or gel after touching:
Other people’s desks, conference tables, pens, keyboards, etc.
Point of sale devices (pin pads / styluses)
Items off store shelves
I can hear a single cough across an entire crowded store and then that person goes on my radar and I avoid going down any isle where they may be.
Same thing at work… If I hear you coughing or know you are sick, I will avoid you. If I can call into meetings from my desk, I will. If I have to attend in person, you will likely see me sitting in the back of the room or at least keeping some distance from others. Also, don’t be offended if I decide to put a surgical mask on. These are just some temporary precautions I have to take.
I avoid getting in crowded elevators. If someone waiting for the elevator coughs or sneezes, I will not go into the elevator with them. I will take the stairs or wait for the next elevator.
If I am in the stairwell and I hear someone coming toward me cough or sneeze, I will turn around and go back the other way.
I have even been borderline rude on occasion and asked people directly if they are sick and/or told people to please keep their distance.
I often hold my breath when I walk past people, especially if I know they are sick.
However, we are trying to figure out a way for Ryan to be a kid for a few hours and do some trick or treating on Halloween. I think the plan is for him to wear a mask under his mummy costume, we will go early to avoid crowds of kids, and we will wipe down the outside of all of his candy wrappers with rubbing alcohol before he can have any of them.
Upcoming TV Commercial:
Ryan and his sister will be in a national TV commercial scheduled to run November 22 through January. I am hoping to be able to post more details soon. It involves a major auto-maker, a national charity, and ties to Ryan’s transplant. Another Hint: “Love”
Through this opportunity, both kids received some fun mail - invitations to join the Screen Actors Guild (SAG). We will be saving the letters of invitation for their scrapbooks, but we don’t plan to spend the $3,000 per kid to join since we don’t anticipate anymore “acting” gigs in their future.
Ryan will turn 6 tomorrow! He doesn’t know it yet, but we made last minute arrangements for one of his best friends from school to come over and hang out with him. He is going to be so surprised. He hasn’t seen any of his friends in almost 8 months!
Even with the GVHD struggles and the year-long required changes in lifestyle to isolate Ryan from infection, overall, he is doing very well. There are many medical professionals that we are just now re-connecting with for the first time post-transplant, and all have commented on how great Ryan looks. I agree. I think most people meeting him for the first time wouldn’t have any idea what he has been through in the last year and a half.
Once all of the restrictions are lifted (hopefully by late spring 2015), we plan to make up for lost time. Ryan is already making a mental list of all of the things he wants to do and the places he wants to go. Yesterday out of the blue he said “The next time we go to
I can stay in the loft because now I have platelets.” (He was referring to a
place we previously stayed overnight. It
had a ladder to a loft that I wouldn’t let him sleep in because I was worried
he could fall and hemorrhage.)
Note: The pictures from this post were taken a few weeks ago. Ryan decided it was time to inherit his older sister’s Razor 360 scooter. It looks like fun – I think they need to make one for adults!
WBC: 7.62 (normal)
RBC: 4.14 (normal)
Hgb: 13.2 (normal)
Hct: 37.1 (normal)
Platelets: 248,000 (almost normal! – The GVHD is likely keeping this count a little lower than it is capable of being)
ANC: 1290 (slightly low this week, but it’s normal for this count to fluctuate quite a bit)
Abs eos: 3010 (was 6760 last week – both numbers are very high and a potential indication of GVHD activity)