Saturday, 9 March 2013

Back in the U.S.A. ...

We are back in Grand Rapids.

Adam had a reasonable week last week, generally free of pain and ok(ish). After a lot of back-and-forth we seem to have figured out the right combination of pain meds that he requires for now to keep him comfortable. So we put together a hastily arranged plan to fly back out to see Dr Sholler, re-evaluate Adam's disease, and discuss treatment options. The support we've received from Dr Sholler these past few weeks has made such a difference; we've spoken pretty much every other day including at weekends, and in between I'll get the occasional message asking how Adam's doing if we've not spoken for a while, or he was having a difficult time when last we talked. And it's not as if she isn't a very busy person.

We've also received tremendous support from our community team - we would be lost without them, and from the symptom management team at the Royal Marsden. When we spoke to Adam's consultant at the Marsden a few weeks back she made it clear that making Adam comfortable was their primary objective, but also said she would support us in whatever it was we decided to do.

Having decided we wanted to take Adam back out to the U.S. provided he remained well enough, there were practical considerations that we needed to plan around. Adam is requiring blood once a week, and platelets twice a week at the moment. The combined effects of disease and treatment on his bone marrow. Last weekend, due to a very low platelet count, he had a slow but persistent nosebleed that blocked both nostrils with clotted blood that required us to take him up to Epsom Hospital at five in the morning. When eventually he cleared his nostrils after getting transfused the one side must have been about 8cm long; it was enormous. This episode obviously served to cause concern about the prospect of Adam spending 9 hours at 30,000 feet flying across the Atlantic.

Our plan was therefore to prepare Adam for the flight on Wednesday by giving him a blood transfusion, double platelet transfusion, a shot of G-CSF (Adam's neutrophils were now zero), 4mg of Dexamethasone (steroid), and changing his Fentanyl patches (pain relief). Our hope was we'd get all this done, and be able to settle him for a good night's sleep with a 6am start required on Thursday to catch our flight. Well, what a disaster Wednesday turned out to be.

Tara came to do Adam's bloods at 10am, which set the wheels in motion. However, it wasn't until 5pm that Epsom were ready for us to go up there; not a great start as a late finish was now already guaranteed. By the time his blood was up it was nearly an hour later, and it was around 9pm by the time they'd finished. The first pool of platelets then went up. Now the first of the bad news; they only had sub-cutaneous (injection) G-CSF. Adam demands IV when he's already accessed, and he was adamant nobody was going to stick him with a needle. From bad to worse; the first pool of platelets finished and I'm now visited by the Registrar who apologises 'but only one bag of platelets were issued.' A second bag is being issued now by St George's, the driver is still there, and it'll be with us in 1-2 hours. So, I'm faced with taking Adam home without G-CSF and only one bag of platelets, or having him stay in the hospital until very late, and then waking him at the crack of dawn for a long day of travel. The nurse then comes in to say they've found some G-CSF that they can give IV, which made my mind up as we'd give that whilst waiting for the second pool of platelets. G-CSF done, I settle down in the chair to rest whilst Adam sleeps on the bed …

I'm woken at 11:45pm by a knock on the door and a second doctor asks to speak to me outside. The one from earlier is still on the ward but I think they have decided to take it in turns to tell me things I'm not going to like hearing. She is very sorry, the platelets have arrived but they've issued the wrong ones. They are re-issuing the correct ones now but it'll be another two hours before they arrive.

I think my response was something along the lines of "What a complete and utter fuck-up." I didn't raise my voice though I hasten to add, but only because I was too drowsy from napping in the chair.

So my choices are (1) wait around to give Adam the second bag of platelets, take him home at 3am and then wake him up at 6am to go to the airport, or (2) have them de-access his port, take him home and travel on a single bag of platelets. I opted for (2); and I may not even have asked nicely for him to be de-accessed, I can't quite remember exactly. As I told them, the one time you really need things to go to plan, and for people to be on top of things ...

We get home past midnight, I put Adam straight to bed and finish my packing - eventually getting to bed myself just before 3am.

Of course, we fully expected our trip on Thursday to be a complete and utter nightmare. Adam would be tired, irritable, grumpy, uncooperative, tearful, we'd struggle to get him to eat or drink anything. As it turned out it was nothing of the sort. Adam was great company from start to finish. He didn't sleep at all on the plane, just watched his iPad; then settled down in the car on the drive from Detroit airport.

Having been unable to secure a room in either Renucci Hospitality, or Ronald MacDonald (due to the last minute nature of it all), and needing somewhere to prepare food for Adam we booked a little cottage for 4 nights in Newaygo, around 45 minutes drive North of Grand Rapids. The plan was for a clinic visit on Friday, probably with a platelet transfusion to see us through the weekend, and then to have a quiet couple of days before getting down to business next week.

So much for that idea. On Friday morning Adam spiked a fever of 39° and is currently an inpatient on the 9th floor of Helen DeVos Children's Hospital with a confirmed gram-negative blood infection. He's on IV antibiotics, and although his fever has subsided since late yesterday, he's been experiencing rigours (uncontrollable shakes) so they are keeping a close watch on him. Gram-negative bacteria are more difficult to deal with than gram-positive, so it's not the best news to start our visit with. Plans for next week will depend on his continued response to antibiotics, and how his white blood cells respond to G-CSF. That little cottage in Newaygo has long since been forgotten - I packed up our stuff this morning and we've now got a room at the Renucci Hospitality House adjoining the hospital.


  1. Oh Nick what a balls up for you all. Why oh why cant hospitals get themselves organised. I know that there are good people who strive to do good job but so often i hear of needless mistakes and delays. I hope that Adam kicks this infection into touch very quickly.

  2. oh! and at last I can post on here!

  3. Bloody St. Georges (if you'll excuse the pun) every are responsible for all peadeatric blood in SE England and they are rubbish, they've got the t-shirt with incompetence written on it! shocking malpractice, thank goodness for positive little boys, despite the tragic situation they find themselves in. sending positive vibes Adam's.way. Xxx