We have had several posts from adults with ITP, now we have a mother explaining the anguish of watching her child deal with this blood disorder.
This family resides in the UK but this same scenario is repeated worldwide. I applaud all parents who cope with dealing with their children having ITP.
It was supposed to have gone away within six weeks, yet three years later those three little letters, ITP, are still a huge part of our lives.
It began with a bruise which appeared overnight on our two year old son’s arm. It was vivid purple, hard to the touch and raised up—we were not even sure it was a bruise at first. It was the weekend so we trekked off to the minor injuries unit at the hospital, and within an hour of seeing the doctor there, we were at the acute assessment unit of children’s hospital and our lives were changed forever.
The diagnosis of acute ITP is one of elimination: we can’t identify it as anything worse so it must be ITP. We were given an appointment to see the haematologist and went home to google Idiopathic Thrombocytopenic Purpura. The haematologist told us that 80% of children spontaneously go into remission, more so if they are male and young. Our 2 year old son had good odds. We should watch him carefully and wait for him to cure himself. Watch and wait—how hard could that be?
On our second appointment with the haematologist 8 weeks later, we were told that our chances of complete remission were still great. Our son’s count was still under 10k (the normal range is 150k to 400k). We didn’t let him have a play centre birthday that year. We went home to watch and wait some more.
Over a year later, we were still watching but mostly waiting. We had a lively, active four year old and those restrictions we had enforced in the early days had mostly gone by the wayside. We had to let him live his life. He had bruises and petechiae but no more serious symptoms. He was about to start school and for me the thought of him running around the playground with 200 other kids was terrifying!
Our haematologist supported us in feeling that our son’s quality of life could be improved by medical intervention and we agreed to try Rituximab in November of 2009. This is a drug (originally developed for chemotherapy) that would basically destroy his immune system and allow him to rebuild it; the analogy we were given was that it was like rebooting a computer to fix a problem. Our son was 4 and his platelet count was 9k.
Watching your child get hooked up to an IV for the first time is hard to take. He was fascinated by the process, though, and happy to spend the day on a hospital bed channel-surfing his own TV and playing Nintendo. The first infusion was slow, the second saw his count rise to 14k - double figures for the first time since diagnosis. It was looking good. Then he contracted chicken pox—a normal childhood disease but possibly serious for someone with a compromised immune system. The morning scheduled for his fourth infusion, he woke up with a severe nose bleed.
We headed for the hospital and were put in isolation because of the dangers of chicken pox for the oncology patients on the ward. The bleeding did not stop and he started vomiting the blood that was going down his throat. The consultant gave him two units of intravenous immunoglobulin (IVIG) and a unit of whole blood. As soon as the IVIG hit his system, he stopped bleeding and was able to sleep. We spent two nights in hospital and were then sent home. For a while he lived on the borrowed platelets and started to look great: no bruises, no petechiae.
Then they started to reappear. He had his last dose of Rituximab but sadly his platelet count did not go up any further. Shortly before Christmas of that year we were back in hospital with another unstoppable nose bleed. More blood products given by anonymous donors helped to keep our son alive.
In Jan 2010 he started school. Together with the school we put a care plan in place for him. His consultant gave permission for him to take part in all aspects of school life including PE, but clearly he would need close monitoring.
Two more nose bleeds, two more rounds of IVIG, and spring finally arrived. The cold season was hopefully over and we would be once again free of snotty noses leading to bloody noses. With his count running consistently under 10K we were advised not to fly long haul. So our family visited us last year instead!
Autumn approached and he wanted to do tag rugby—we got medical permission and he loves it! But every club, sport and outing involves an explanation of his disorder. Every glance at his bruises when he’s out and about makes me feel sick. Once at the swimming pool, a ‘concerned’ mother suggested to me that if my son had chicken pox he should not really be swimming. His body was covered in its usual fine petechial rash. My son stopped her in her tracks by confidently saying ‘Actually I have low platelets and my blood vessels burst on their own and that’s what you see; I’m not contagious!’
This last winter was mercifully kind—we visited hospital only 4 times and each time the nasal bleeding stopped without any medical intervention. His count, however, stayed mostly below 10K. We tried a short burst of steroids but he did not respond to them.
He turned 6 in the spring and had his play centre party, and my hair turned a little greyer! We are now starting the process of entering him in a drug trial in the hope of raising his count to a safer level. It’s a long road and there are many mountains we have to climb before we are even guaranteed to get him the drug. Weekly visits to the hospital for blood draws and he has to learn to swallow tablets! Even then it will not cure him just hopefully get us through next winter without any hospitalisations.
Three years on, we are still mostly watching our son grow and waiting for his body to correct itself. His most recent count was 18K: low for most people but a cause for modest celebration for us. We’ve learnt not to put too much emphasis on his numbers though, rather to look at his symptoms. He gets very tired and is often emotional and has a tendency towards always expecting the worst possible outcome. What he doesn’t know about germs isn’t worth knowing!
Complete remission is still possible for him although it feels as if it is getting further and further away. Those three little letters still play an enormous role in our lives but our story is not over yet. In our family we have tried to put back into the system at least as much blood as we’ve taken out since his diagnosis (even though the IVIG is made from thousands of different donations). We do what we can. If you can donate blood or platelets, we really appreciate it and lives do depend on it.