Day + 14

Thank you to everyone who has reached out and continue to support us during Ellie’s BMT. We want to keep everyone’s mind at ease during this period and will aim for weekly updates.
 
Since our last update, Ellie has continued to struggle physically and emotionally however, without any major complications. There have been a few close calls. As we know, one of the major challenges is avoiding the smallest infections that could prove life-threatening.
 
In the last week, Ellie has had 3 infections, though all seem to be under control with several antibiotics. The first was streptococcal pharyngitis (Strep) which we believe started in her mouth due to the mucositis. It then entered the blood through her open mouth sores. The problem with Strep is it apparently sticks to plastic so the concern is it could stick to her central line which runs through her heart and enables her to receive all critical medication. This would mean we need to remove and replace her central line, which is a significant surgery and one that she is not stable enough to undergo. Thankfully, the strep appears to have cleared, though she will remain on Clindamycin antibiotics for a further 10 days.
 
Ellies second infection was staphylococcus. Staph can come from anywhere and is commonly found on the skin. It could have been caused by any one of us not cleaning something well enough, or just from Ellie’s own skin which is why we shower her every day and are extremely careful with hygiene. This also appears to be under control with vancomycin antibiotics.
 
Ellie’s third infection which was confirmed today is believed to be micrococcus luteus, another bacteria commonly found on the skin. We’re still waiting for clarity on the sensitivity of this bacteria to antibiotics however, we understand it is likely sensitive to Vancomycin and Clindamycin.
 
Ellie is on a range of other medications for several other ‘smaller’ issues that we’re working through. These include consistent high blood pressure, blood, protein, and glucose in her urine, low potassium levels, fluid retention, and a heart murmur. These all point to reduced major organ function, but nothing that has flagged as a serious concern yet. I’ve mentioned in the past that much of the trauma Ellie has endured has become normalised. In any other circumstance, we would be concerned by just one of these issues. However, all things considered, they are of lesser concern right now.
 
Ellie is now on constant Fentanyl (morphine) background with a Patient Controlled Button Analgesia (PCA) button for pain break-through. The background has been increased a couple of times to keep on top of the pain and it seems to be working reasonably well. She’s mainly in pain due to mouth sores, mucositis, gut pain, and regular nerve pain in her side, shoulders, back, and legs.
 
The good news is the nausea and vomiting has almost completely subsided, so her appetite is returning. In the last few days, she’s been eating soft foods and lots of cereal. This is actually a big win, and the team are particularly impressed as its common for kids to not eat for weeks on end during transplant. It means she will be less reliant on TPN and nasogastric feeds in the medium term. In fact, she isn’t on TPN yet which we had expected.
 
The other early sign of some good news is today, her White Cell count appears to have jumped up to 1.5. A jump from 0.0 to 1.5 is a considerable jump for a neutropenic child. There was also an early indicator of neutrophil count recovery commencement however, we will monitor this over the next few days. If indeed her WCC and neutrophils are starting to recover, it signals the beginning of engraftment. This is excellent, but also a little scary as we’re entering GvHD territory – one of our biggest concerns.
 
So, the next 1-2 weeks could either be really good with blood count recovery due to engraftment and hopefully Ellie starting to feel better, or really bad due to GvHD. We have our fingers crossed and are optimistic for the former.
 
Despite all the pain she’s enduring, Ellie still manages to occasionally give us a cheeky smile such as in the attached photo.
 
PC