Ginger here, checking in with an update on Ian’s progress. Things have been very good, not a day goes by when I am not grateful for being able to do normal things with the boys, like the park, the zoo, another park, more parks.
I am very germaphobic, so we are still sticking to mostly outdoor activities, since it is flu season. Despite that, Ian (and everyone else) picks up their share of germs and I am learning that Ian is still susceptible to developing pneumonia. We all got a little something at the very beginning of the month and Caid and Henry got through it with runny noses, a cough, but Ian’s turned into pneumonia in both lungs. We avoided the hospital, but had to spend several hours in the pediatrician’s office for several days getting antibiotic injections and breathing treatments.
Ian has permanently damaged lungs from the pneumonia and HLH flare that caused his respiratory failure and almost took his life. Our pediatrician encouraged me by saying that as he grows (and therefore as his lungs grow), the percentage of the damage will become smaller in proportion to his lungs, so he may be able to overcome some of this difficulty with developing pneumonias frequently. He said he may not be able to participate in sports that require a lot of exertion, we just have to wait and see how he does. And when I asked if this means that Ian should definitely not smoke, he was adamant about his agreement.
We had our monthly checkup at CHOC for blood work and Ian gets to take a break on vaccines for 9 months or so. One has to be completely revaccinated post BMT, because a BMT wipes out the immune system and replaces it with a new one. So, another thing poor Ian has to endure. When strangers comment on how he is so much “less friendly” than Henry, I don’t go into why, because they don’t really want to know; they just think they are making an observation about how “twins are always so different”. Which they are. But still…
Anyway, so because it is the height of flu season and we are going to the cancer clinic where every kid is immune compromised from chemotherapy, CHOC asks that only the patient and parent come to the appointment. Luckily, Papa Steve is close to CHOC and has been able to meet us there to watch Henry for the approximately 2 hour appointment.
So we received his latest chimerism number (the percentage of donor blood system) which was 57%. I know, that sounds bad, but his previous was 53%. When the doctors got the 53% number, they sent a T-cell chimerism count in addition to the regular chimerism. Basically, T-cells are the important thing with HLH. The donor T-cells are the thing you need to keep HLH from “re-flaring” (if that is even a word!) The T-cell chimerism count came back as 100% donor, which is excellent news. So we don’t worry about the 53% or 57% chimerism numbers, we just keep watching it. Why don’t they just do a T-cell count every time? My guess is, because it is ridiculously expensive and specialized. So they just do it when they are worried about dropping chimerism numbers.
So yay for that news! I am daily reminded of how fortunate and blessed we are to have Ian, and to have him doing so well. As I have learned more about HLH, I really see how many obstacles there are, not just with the diagnosis and the disease, but with bone marrow transplant. And we have been incredibly blessed with so much support from so many!
I went to pay Ian & Henry (and Ginger) a visit today, and took a video of the boys enjoying their manga-doodles.
One of my favorite parts is when Ian runs in from the kitchen after getting washed up, and Henry says, “Hey Ian, how bout this, Ian?” and the “ta-daaa” at the end is pretty great, too. Enjoy!
Ian has a cold, and was running a low fever today. So if you think of it, please keep him in your prayers. Thanks…!
i’d like to start off with the greatest family portrait in the history of the universe…
Caid’s letter to santa on Christmas Eve…
Henry being adorable…
and finally, a little video i took the evening the family got home from their Christmas visit to AZ…
The twins are unfortunately still experiencing a lot of illness. Ginger will update on all of that soon, but the family could really use prayers for healing. Thank you! Hope everyone had a wonderful new year! ~~cnp
The last post was to bring attention to the blog Support Madeleine.
Little Madeleine passed away this morning, at home with her family. Today she is in glory, safe in the arms of God. My heart is heavy for Veronica and the whole family, please be praying for them …!
Over there on the sidebar under “Other People You Should Visit” is a blog called “Support Madeleine”.
Madeleine was born in October 2011; a perfect, beautiful little baby, but before long it would be discovered that she was a very, very sick little girl. I’ve had a link to her because she recently underwent a BMT, and Veronica, Madeleine’s mother, has frequently written prayer requests for Ian on her blog.
I have been keeping up with her journey for a year, enjoying her huge smile and gorgeous eyes, watching her progress through her unbelievable fight with cancer, and reading Veronica’s words of prayer, frustration and gratefulness through the whole battle.
Today Veronica posted the sudden news that Madeleine is done fighting. There is nothing more that can be done for her, and her broken hearted family is taking her home–out of the hospital, out of chemo, out of any more treatment–to enjoy the last few weeks of her little life.
My heart is broken for them, and i wanted to ask for prayer for this family, who, 3 days before Christmas, are preparing to say goodbye to their baby girl.
I’ll try to keep you all updated…thank you all so much… ~~cnp