Thursday, 15 November 2012

A Tough Time …

We were in clinic slightly after 8am on Monday, a long and difficult day ahead, with Adam's new port placement scheduled for early afternoon. We'd had a reasonable weekend, Adam's mobility problems preventing us getting out and doing anything, but that aside he was in good spirits. As well as the surgery it was day one of the new treatment combination we're trying. It's a twenty-one day cycle, and we rescan the following week - which means we're out here until the start of December at least. We could have enrolled Adam on a different trial that might have got him back home sooner, but it's our decision to go this route.

We were met in clinic by our nurse, Julie, who gave us a run through of the schedule. Adam was nil-by-mouth in preparation for the portacath insertion. In the morning he was due to get a full blood count, Benadryl, Tylenol, platelet transfusion, repeat blood count, Zometa (bone strengthener to help with Adam's disease/pain) and then downstairs for anaesthesia and surgery. The nurse got a cannula (or an IV as they're called here) into Adam's arm (the third he's had since we arrived) and took bloods. The surgeon wanted his platelets to be above 100 for the procedure. We skipped Tylenol, and knowing what we know now we'd have skipped Benadryl too, but we didn't.

We got settled into 'Infusion Services' and our appointed nurse there set everything up. Almost as soon as the Benadryl had started going in, Adam began complaining of burning pains up his right arm, or more specifically in the vein running up it. Next the platelets went up at 250ml/h; the pain intensified, Adam begged him Mum to turn the machine off "Pretty, pretty please, Mum. Turn it off, turn it off." he sobbed. The problem is you can't turn platelets off, they clot. Once they're up, they've got to go in. And in any case we were on a schedule to get the port fitted; with nothing but peripheral IV access if we'd stopped then we'd only have wound up in the same situation the following day. Or so we thought at the time, with hindsight we know it wasn't the platelets themselves that were the problem, nor getting an infusion via the cannula per se. It was the sodding Benadryl that we never really needed that caused all the trouble. With Adam becoming more and more distraught we were moved out of the open curtained area and into a side room. Eventually the Benadryl kicked in to some positive effect and Adam, exhausted from the pain, pleading and distress, drifted off to sleep.

The blood count taken when we first arrived in clinic had Adam's Hb at 7.8, Platelets 68, WBC 3.01. The nurse arrived to take blood for a repeat count, to verify the platelets were high enough for surgery. Trying to get the peripheral IV access to bleed back was fun. The nurse pulling back, the technician squeezing Adam's arm, Adam screaming at her to get off because his arm was still hurting like hell. And no blood coming out. Eventually after several minutes and a number of repeat performances they did manage to get a couple of millilitres, enough for the blood count they needed.

We'd already decided there wouldn't be anything else going through the peripheral line except Adam's anaesthetic. Zometa could wait until the following day, when Adam's port would be in and accessed. Adam wanted to be sure his cannula would be out, and his port accessed, when he woke up following surgery. We assured him that's how it would be.

Julie came in. Adam's blood counts had come back. His Hb had dropped to 6.8, platelets had fallen to 56, and WBC had risen to 4.0. For those not familiar; Hb is haemoglobin the red blood cells that carry oxygen round the body, platelets are responsible for clotting, and WBC (White Blood Cells) is the immune system and infection fighting cells. This was not the expected result of a platelet transfusion. Obviously with all the messing around the blood sample from the peripheral IV had been spoiled. But they'd still need an accurate record of the true platelet count. So the phlebotomist had been paged and was on her way to take blood from Adam's other arm, as the clock was ticking to meet our slot for surgery. The phlebotomist is the super-fast blood count person. She just comes in, whacks on a tourniquet, finds a vein, sticks a needle into it, draws some blood into a vial, and is on her way again, job done. Not what Adam is used to, but he's quite good with most things provided he's given a little time to process what needs to happen and retains at least some control over how to achieve it. So a few minutes later he was telling said phlebotomist "When I say I'm ready I'll close my eyes, you count 1, 2, 3, and then stick the needle in." And that's how it was. And we duly waited for the results.

Julie came in. Adam's blood counts had come back. Hb and platelets the same as before, WBC further increased to 4.65. He'd now require an immediate second platelet transfusion in order to get his port put in, and was also now in need of a blood transfusion! What can you do? It's no use getting up and saying enough is enough. This wasn't optional. So we waited for the second bag of platelets. This time A-positive for A-positive patient, not that it should matter (previous was A-negative which can be given to A-positive patient, but not the other way round). Up they went and the machine which had been gently infusing hydration at 10ml/h to keep the line open was cranked back up to 250ml/h. Now, I may not have actually held my breath, but I did think "here we go again." Nothing. Not a peep out of Adam. These platelets went in without any discomfort whatsoever. Bloody, arsing, Benadryl.

Platelet transfusion finished, another blood draw from the IV, another wait, and finally confirmation that Adam's platelets were now a more healthy 134. We were good to go downstairs to the surgical area. It was mid-afternoon, three hours later than planned. Adam hadn't eaten since the night before, and had drunk nothing since 9am. Just great.

We went through the routine downstairs with the surgeon and anaesthetist, signed the necessary, kissed Adam on the forehead as they sent him to sleep, and left.

Port placement went without a problem. They did a mirror image on Adam's right side of the port he'd had removed on his left side a couple of weeks ago. Adam woke from the anaesthetic saying he wanted to go back up to the 10th floor in the bed. That was fine they said.

What they didn't tell him was that when he got back up to the 10th floor he'd have to get out of the bed. Or that he was due IV ondasetron as a ten minute infusion through his port, followed by chemotherapy given as a slow push. He was still in a Propofol induced angerthon at this point. He WAS NOT getting out of the bed. And YOU ARE NOT giving me ondasetron. And YOU ARE NOT leaving my port accessed overnight. And JUST GET OFF ME AND LEAVE ME ALONE. The nurses put a hot blanket and pillow in one of the comfortable chairs to try and encourage Adam out of the bed. He was having none of it.

"What's the point in me struggling to get in that chair when I've only got to go and get out of it again to get in the pushchair? That's a stupid idea. Why can't I go straight in the pushchair?"

"You can Adam."


Adam got the anti-sickness, he got the chemo, and we left to head back to the Renucci House. It was near 6pm. He was very sore, quite rightly pissed off, tired and hungry.

The following morning we were due back in the hospital at 8:30 for the Zometa, and a blood transfusion. We were late. It took a full 45 minutes to get Adam out of bed. His right arm was numb, his port was hurting, his legs were aching, during surgery they had accessed his port and pointed the line up so when it then dangled down it caused the dressing to tug at his skin. We made it back to the 10th floor eventually, and at Adam's request we settled back into the same room as the day before. His temperature was 37.6 when we arrived and so the nurse took blood for cultures 'just in case'. Eminently sensible we thought, though not what we are necessarily used to. He got some Tylenol to make him more comfortable, we watched some TV and a movie, he got the Zometa and blood; by the time we were done it was 4pm. His temperature as we left was 37.7 so we decided to leave his port accessed just in case something happened overnight and we needed to use it. If not (worst case that was actually best case) we'd go back up to clinic the following day to get it flushed.

We wheeled him back through the hospital to Rennuci, complaining that he was cold. By the time we got back up to our room on the 4th floor he felt hot. I took his temperature; 39.0°. So we about turned and back we went through the hospital to Helen De Vos Children's Hospital and, as it was now a few minutes past 5, on to the Emergency Room. There they invoked their fast track procedure which means they have to get vitals, bloods for the lab, bloods for cultures and start antibiotics within one hour. Adam looked pretty ill by this time. He really did not want to get out of his pushchair to get weighed (we ended up putting him in a weigh bed). And he really did not want to have his second visit from the phlebotomist in as many days (they take blood for cultures from both the central line and a peripheral vein when possible infection is indicated). Initially I thought we were going to have trouble, because the medical staff needing to meet their one-hour target started off looking a little impatient. However, once we explained that if they gave Adam a little time and space to process things he'd be fine, everything ran pretty smoothly. After a discussion with the on-call paediatric oncologist (to explain his allergic reaction to penicillin etc.) he had some antibiotics over a 30 minute infusion, some Tylenol for the fever and we were discharged back to Renucci.

Today we were back up in clinic to get Adam reassessed. He was again feverish, and got a second dose of antibiotic. This afternoon we came back to the Renucci House and he's alternated between watching TV and sleeping. He's clearly got something going on.

Right now it looks like the antibiotics have kicked in, though not necessarily in a good way. As I was typing this he's just called over to me from the bed in which he's trying to get to sleep "Dad. Quick. I think I've poo'd my pants."

And that, I must conclude, is a rather fitting end to a shit few days.


  1. This just sucks! Sending all the best wishes to all of you in the States. Wish there was a magic pill!

  2. It's heart-wrenching that any child has to go through what Adam is going through, and it must be relentlessly hard going for you as his parents. From one father to another, my thoughts are with you and I hope things get better for you soon.

  3. what an awful time Adam and you all as a family are having. After reading Adams full story,I can't help but think Adam has been through so much in his fight of this horrible illness. could it be enough is enough ? and have happy times Adam wants to do away from ongoing tests,hospitals,etc,etc and for him to be with all his family together to have fun and laughs and what he feels well enough to do.

  4. woke up very early this morning with thoughts of Adam. I have a boy of 9 years old and I thank God he is healthly every day along with my daughter who is 11. I pray for renewed strength for you two as parents and a miracle - you are wonderful parents and are doing all you can for your child. Take Care x