In late August 2017, AAMDSIF paid a visit to NIH patient John Vasquez and his sister/caregiver Isabella, several weeks after his stem cell transplant for severe aplastic anemia. Here's what each had to say about what they're doing and how they're feeling. If all goes well, they will be heading back home to San Antonio by February of next year. We’ll be updating their story here each month!
Stem cell transplant patient
How are you feeling now, about two weeks out from your stem cell transplant, and what are you hearing about your recovery?
At first there was a lot of pain from the transplant conditioning, and it really took around a week and a half for this pain to recede. I had very little appetite. There still is some back pain, however. But now I feel a lot better, eating solid food, getting back to some physical activity—even if small things like getting out of the chair or bed and walking around the hospital floor. Each day I feel a bit better and more alert.
Every day, someone from the transplant teams stops by and often it’s more than one person -- there have been as many as seven or eight in the room, and one time my sister counted 16! I’ll talk with many of them and tell them how I’m feeling, and they tell me how I’m progressing – and thus far it’s really good news about how the transplant is doing. It’s encouraging, since I am the first SAA patient to have this kind of transplant and this first instance of it is going well.
Next week I will be discharged from the hospital – a free man -- at least for now. But I’m still on NIH grounds, staying at the Children’s Inn for quite a while to come before returning to San Antonio.
What have you been doing for John since his stem cell transplant occurred almost 2 weeks ago?
I’m have stayed here most nights up until this point. I am supposed to push him to get physically active up to the point that’s allowed for his condition. It’s like track – 16 laps around the nurses station area is about a mile. The doctors want him to be able to do 10 laps before he’s discharged and he’s up to about 6 laps right now. So if we don’t’ make that goal, he would have to remain here longer.
But becoming physically active again is important to recovery. There’s no getting around this so I have to make sure he’s meeting the goals that are set, and let the team know if he isn’t. So we have our good days and a few less good days but still the trend is positive. We’re sister and brother so we know how to work things out.
Even when he has been in pain – part of this is good news as that’s the stem cells engrafting and growing. The team says he’s coming along. His ANC coming up, and platelets take longer to come back, so that’s still a daily transfusion. We’re getting some numbers also about the current ratios of the type of stem cells used in John’s transplant – it’s all very interesting to follow.
We also go to recreation therapy – fun things happen. We made various animals from flat wooden sticks and glue. Even video games are part of this recovery! But the whole idea is to get him physically and mentally active again in this immediate post-transplant period.
The clinical trial you’re now part of since arriving here in a caregiver role - how did this happen?
It’s just getting started. I have been through blood work (phlebotomy) and I had to take a survey on mental/emotional outlook. There’s the randomization -- which group is the control and which group is the interventional side – and I’m in the latter group. There will be more to tell as the weeks pass. One part of this study is to see if yoga helps with stress levels!
In November, 2017 we received this update from John's sister, Isabella.
We have visitors from home! John’s young son Gavin and our younger brother Tino are here for a week. We are all going to try and get out to see some local sights. It’s really good for us to have family come visit.
John had to go inpatient for treatment because he got a virus (CMV). But he was officially cleared of it just a few days ago. This is determined by two different tests, done a week apart. We’re quite relieved to know this. The CMV medicine negatively affected his platelet counts for a while, but nothing else. So besides that, his counts are doing well.
However, he had one recent inpatient for a short period, just for things unrelated to the stem cell transplant or the earlier CMV episode. But he still had to be watched for about a week. But he did get a cold about a week ago. Because of all the immunosuppressed children here at the Inn, we have been staying in a nearby hotel and we just took our essentials. A recent test shows he still has this cold so we can’t return to the Inn just yet. We’re doing everything we can to get him over this – this is our goal right now.
But John’s energy and strength seems to be coming back along with his appetite. We are still working on getting his physical stamina to improve, and this is only built up by moving around. We have been walking around town and he’s doing well!
We are working to get back to the more normal routine we had until recently. Our clinic visits we see different doctors and a social worker. Our clinic schedule had been Tuesdays and Fridays. But with this continuing cold, we have to come in every day from the hotel. We’ll find out today if this schedule continues or we can go back to 2 days a week in clinic.
We’re still scheduled for February to return to Texas, but if things go really well there’s a possibility we could head back in January. But this would only be if the doctors think its ok.
On December 14, 2017 we received this update from John.
There were some concurrent setbacks – first came the cold and we were moved to the hotel, but after a while we were battling 3 things at once! First was a normal cold. Then when I went in for my routine evaluation, RSV (a respiratory virus) was detected and I was re admitted yet again. First I was treated with oral medication but then was switched to an inhalant that happened several times a day. Somehow, while I was in the hospital I got viral pneumonia which they treated as well. So I was discharged about a week ago after getting through these three things.
But the good news upon returning to our off-site location is that we were able to move to a better living space since I was still not cleared to return to the Children’s Inn. We let his medical staff know that we simply were not able to prepare the kind of diet I am required to have, and the new location has facilities that allow for this. We don’t have the social environment –the friends and family members we met at the Inn and its great residence and kitchen facilities – but it’s a big improvement and my diet is back on track. We’ll be here until at least early January because I have to be completely cleared of RSV and everything else before I can go back to the Inn. As of now, I am recovering, but not completely free of these.
These events caused my blood counts to drop from where they had climbed up to. I had to have my first transfusion in quite a while – just post-transplant. But now they’re coming back to where they had been. It was just these infections and possibly a few of the many medicines I’m taking that cause the dip in my blood count. The treatment team is great about keeping me informed -- where things stand and what I need to do. Still, we have been able to get out and do a few things – local places. With Christmas coming, Isabella got to see a presentation of the Nutcracker ballet. It was a good way to meet some Inn residents that I had not met before. Before that, she went to the Smithsonian Natural History museum and the zoo.
The recent small snow was something – being from Texas we had never seen snow in our entire lives! So we are back to where we were before– still not at the Inn until I am completely cleared of these three setbacks – the cold, RSV and pneumonia but I’m doing my clinics on Tuesdays and Fridays! And pretty soon a decision will be made on when we can return to Texas.
Right after Christmas, we met up with John again!
Christmas Eve and Christmas were pretty normal days. We picked up a few packages from relatives that were mailed to us, including some banana bread from aunt that’s really the best ever – at least we think so! And I stuff moms are expected to send, like new socks. It’s nice to hear from home.
I had been readmitted in November for the RSV and then while there, they found pneumonia – so we were working through that and I was released. But right after my last update with AAMDSIF, in fact that very night – I went in for yet another readmission because from recent blood work they found some bacteria in my blood. I was in for about a week while that was taken care of. You can see here (shows lab report) my white blood count and hemoglobin are in the low side of the normal range. Platelets which had been a big problem are also lower normal but this is a huge improvement given that at one point my platelet level was zero.
I’m happy to say that one thing that has really come back is my appetite. For weeks after the transplant, I found it difficult ot eat and had to cut portions way back. I had lost weight and was nauseous and dehydrated at the time. I was counseled to drink lots of fluids -- so that’s what I did. I’m putting away a lot of PowerAde! But as my overall condition improves, it’s easier to eat normal amounts again. So I am back on my regular clinic schedule, except for some changes due to holiday schedules. Where we spend our final weeks is yet to be decided.
So looking to the future – 2018 is coming, although we’ll be in on New Year’s Eve. I am hoping before long we’ll be on our way home.