Deakon's Journey

Deakon's Journey...by Karen Beavers

(you may find some of the following images upsetting) My gorgeous boy was born by emergency c-section after 22 hours of labour. He was in severe distress. He needed resuscitating at birth. Hours later he was taken to SCBU and given a platelet transfusion. Throughout his treatment Deakon had many life saving blood and platelet transfusions. Deakon spent the first 12 days in SCBU. His blood was only tested because he had small red 'blisters' all over his back and head and one on his nose. These little things saved his life! They are Xanthagranulomas and should fade over time. At 12 days old Deakon was rushed to Manchester Children's Hospital in an ambulance with a platelet count of 2. They should be between 150 - 400. He was as great risk of a brain hemorrhage and internal bleeding. Deakon was at constant risk of this throughout his treatment.

At 16 days old Deakon was diagnosed with HLH a very rare blood disorder. We were told basically, Deakon's immune system was too weak to protect Deakon from illnesses and viruses and was becoming frustrated so had started trying to kill Deakon.

Deakon had his head shaved and a canular attached to his head so that blood products could be given during surgery. The veins in his hands and feet had been badly scared by the numerous tests already carried out at Blackpool Vic. Deakon had a Hickman line fitted in surgery. He reacted badly to the anesthetic. Deakon was very poorly and admitted to HDU. Deakon began chemotherapy at just 17 days old.

One month old - what a milestone! Deakon was sleeping almost constantly due to strong painkillers and many different drugs. 6 weeks old. We were told Deakon was not responding to HLH treatment and there was no other option but to let him die. To be told this by a doctor was truly shocking, a moment and feelings I will never forget. Deakon's consultant had emailed colleagues in Japan, London and Canada to confirm this decision. We were left to wait for their confirmation but were told that 'the worst' was practically inevitable. 24 hours later Deakon's consultant told us he would be willing to try a Bone Marrow Transplant to cure Deakon but that he only had around a 5% chance of getting through this treatment. This was a difficult decision for us to make as we didn't want Deakon to go through even more suffering just to die but we also felt we had to give him a chance to fight.

Deakon's blood and bone marrow were re-tested. Bone marrow and a small piece of his hip bone were sent to Great Ormond St. Tests revealed that as well as HLH Deakon also had three different types of Leukemia. In his blood, his bone marrow and his skin. Deakon needed an un-related bone marrow donor to ensure the best match possible was found for him. The better the match, the better his chance of survival was. A donor was found, a 9.5/10 match! The donor could not donate for approximately 3 months. We were told if Deakon's condition became even worse or he caught an infection/virus while waiting for the marrow he would most probably die. We were incredibly lucky that a donor was found through THE ANTHONY NOLAN BONE MARROW TRUST for Deakon because 70% of people (mainly children) who need a match never find one.

Deakon caught the flu! Deakon was treated with Ribervirin. He had to wear the box on his head for 8 hours a day - 4 two hour sessions. Medicine was pumped into the box for him to inhale. Deakon actually recovered and funnily enough loved having his head in the box! He would just smile and smile!

Deakon was on steroids which made him feel grumpy, very hungry, hairy and develop a large swollen face. But he still looks cute, although a little sad, my poor baba.

More surgery. That damn Hickman Line never worked properly! Deakon 'crashed' just before he was due in surgery. His heart rate was very high, he wouldn't wake up and blood products were rushed through him. Diagnosis was an infection in his heart. Surgery was rescheduled but unfortunately Deakon again had a bad reaction to the anesthetic used when he finally had his op.

The future was so dark and uncertain. Just wanted to run away with my gorgeous boy, protect him and keep him safe forever. But to be a good mummy I had to give him this chance to fight the nasty illnesses trying to destroy him. There was no turning back.

Looking cute and chubby but this was actually caused by the HLH. HLH makes the body hold fluid in the skin causing Deakon to become more and more swollen until his lungs were squashed and he would then be suffocated. His tummy looks large here, he was only 4 months old. He also had a very large and poorly liver and spleen. They were so sore doctors were concerned they would fail during transplant. They also squashed Deakon's tummy so much he couldn't keep a feed down - even though it was given through an NG tube.

Deakon had a 'reduced intensity transplant' which was a new treatment because he was too poorly to have a normal full intensity transplant. Patients are usually well, or in remission before they have a BMT Deakon was not, he was very ill. This is why his chance of survival was so low. Deakon had 3 different chemo’s (one of them new and experimental) a day for 5 days before his transplant to kill off his illnesses as much as possible, as well as his own bone marrow, and therefore his blood cells. Everything went well on Transplant Day! The man who donated his bone marrow saved my sons life and I will forever be indescribably grateful.

Bag of pinky looking goo is donor bone marrow!

Approximately 2 days after his transplant Deakon was admitted to ICU. He had lung failure and heart problems. The look in his eyes was heart breaking as he screamed in agony while being wheeled into ICU. I have never heard a scream like it. We were removed from the room. The look in Deakon's eyes will stay with me forever, he didn't understand and he just wanted his mummy. I thought it would be the last time I would ever get to look into his eyes.

Staff tried 4 different ventilators on Deakon but they all failed to be strong enough for him. He was put onto the 'oscillator' - apparently the worst ventilator you can be put on. It pumped 600 tiny breaths a minute into his lungs that were so sore and 'tight' they could barely move. Deakon was also attached to a ventilator giving him Nitric Oxide. We were told if Deakon did not improve in 24 hours he WOULD die. It was also a strong worry that his other organs would begin to fail especially his liver and spleen which were already badly damaged by illness at this time. At this point Deakon was having 2 blood transfusions and 4 platelet transfusions a day! All the blood and platelet donors out there played a huge part in saving my sons life! Thank you xxxx

Deakon responded well! We were then told that Deakon was at great risk of catching a virus in the ICU because it was not an isolation area with 'heppa filters' as the Bone Marrow Unit was. If Deakon caught an infection before he started growing his own blood cells from the new marrow he WOULD die. The new Manchester Children's Hospital will hopefully be much better equipped and so this situation will be less of a worry for other families.

Day 5 after transplant approximately, Deakon developed some new blood cells. YAY! He did not develop an infection/virus. Despite been given 'enough morphine to knock out a horse' - as one doctor described it, Deakon would try to open his eyes when he heard his mummy. He could just about manage a little peep. His heart rate would also calm right down when mummy spoke to him and touched him!

Red, sore and peeling skin due to transplant side effects. Back on the Bone Marrow Unit. Poor Deakon he looks sad and poorly. He was in a great deal of pain and at his most vulnerable at this stage of things : ( Very poorly but improving slowly. Deakon was in isolation. Due to his low blood cell count he was still very susceptible to viruses and infection which again WOULD kill him. Within the next 3 months of his recovery Deakon was admitted to MCH 3 times due to a high temperature. If Deakon was to catch a virus at this time it WOULD still kill him. This is the time when most transplant patients die. Waiting for blood test results was awful. Deakon was treated with intravenous antibiotics. He also had his Hickman line removed, a different anesthetic was used in surgery and he was fine!

Deakon still had far to go in his recovery and is in fact still recovering today. It's all a bit complicated though! He will be on Penicillin for the rest of his life but it's not really an issue. Deakon turned one year old. Deakon was in semi-isolation when he came home from the hospital meaning he couldn't spent time with anyone who didn't visit him in hospital so that he wouldn't be exposed to new germs. This was very restrictive but after living at the hospital for 9 months with Deakon it was great to be home. Deakon's blood had recovered enough just in time for him not to have to stay in semi-isolation any longer by his birthday. We had a huge party with lots of well deserved champagne and cake!

Deakon visits MCH every 3 - 6 months now for tests and is considered 'cured' by his consultant, the amazing Dr Rob. We love that man and can talk to him like a friend. He truly loves children and can't do enough for us to make sure we are happy and don't have to worry about anything. Deakon is now expected to have a 'normal' life span and to lead a 'normal' life. He has some development delay that will eventually sort itself out. He also gets very tired at times, he sleeps a lot but his body is still recovering, even now. Amazingly Deakon hasn't had any ongoing complications such as chronic GVHD

We were told that Deakon would have NF1. This would cause Deakon to develop large tumors all over his body and would also make him very vulnerable to developing many other cancers. He had a blood test for this and the results took 22 months to come back to us. This was very frightening. But...Deakon did NOT have NF1! : p Thank God! This result surprised doctors and means that Deakon is the only case ever known about with his combination of illnesses! Medical papers are being written and will be published about him. We have had some horrendous lows with our little boy but we've also experienced the most amazing highs! Everything has changed for us, everything has been put into perspective and we are so much happier than we have ever been. We have our gorgeous boy to kiss and cuddle every day, nothing else matters.

If you would like to be a bone marrow donor please, please contact THE ANTHONY NOLAN BONE MARROW TRUST for an info pack. All you have to do is send a blood test to them. Bone marrow donation is NOT as painful as portrayed on TV shows and can now in some cases even be taken from your arm as if you are donating blood. No surgery is necessary. It is obviously a very courageous thing to do but how wonderful would it be to give another person a fighting chance at a normal life?!
No initial blood test is required now to join the register it can be done by sending in a simple saliva swab!!!

It's been a hard battle for little Deakon but he is such a happy, loving little boy now. I can't imagine how I would feel if he had died and I don't want to as we came so close to losing him on many occasions but I like to think that I would at least realize that to give him a chance at life was the right decision. For him to have died because we couldn't find a donor would surely have been even more devastating. Thank you to everyone who is on the donor register, you are all amazing xxxxxxxxxx

I survived leukemia & HLH Yeah baby!!!! 4 year anniversary of bone marrow transplant.

Started March 20, 2011

Last Up Date March 20, 2011