High Dose Chemotherapy…DONE!

As the title suggests, the last part of Zach’s in-patient treatment is complete YYYYYEEEEEESSSSSSSS!!! It didn’t go entirely without hindrance; on the last day that Zach received chemotherapy he developed a nasty infection in the vicinity of hisHickman line. Normally this would mean that his line would be removed fairly swiftly and he would be put on a course of antibiotics to treat the infection, however nothing is ever that simple with Zach. He needed to have his stem cells implanted on the second day after his last dose of chemo also known as day “0”. This meant that they had to leave his line in place so it be used on day “0” and run the risk of the infection colonising the line. The implications of this are quite severe. A Hickman line is tunnelled under the skin, up one side of the chest and passes into one of the major veins in the neck. The ends of the line sit just above the heart. As you can imagine if the line gets infected it can pass easily to the heart!!! It doesn’t end there either. While all this was going, Zach’s bowels were trying to set new speed records and the results was his potassium levels had started to drop dangerously low. Potassium plays a part in the way electrical signals pass through the heart and if they drop too low you can run into serious difficulties. Zach came to the point where if his potassium levels had dropped any more he would have to transferred to the high dependency unit. Well within a few hours the drugs started to work and disaster was avoided. 

The Stem Cells have arrived



Stem cells thawing

Day “0” arrived and we were blue lighted to Birmingham Children’s Hospital so Zach’s stem cells could be implanted. It is a straight forward procedure. The stem cells arrive in a vat of liquid nitrogen, they are defrosted in a water bath which takes about 5 min,  they are drawn up into a syringe and delivered through his Hickman line over a space of 4 mins which is timed. This was repeated again as Zach had two batches of cells. The preservative the cells are kept in can cause nausea and poor Zach was retching and vomiting for the entire 8 minutes of his cell implant. Another side effect of the preservative is it gives off a smell of tinned sweet corn when it is being excreted through the skin. So for 4 days, Zach’s isolation room smelt like a tin of green giant. The stem cells help the bone marrow recover after high dose treatment, and by day 12 the only support that Zach needed was platelet transfusion, which are still ongoing, as these are the last to recover. He will need transfusions of blood and platelets for up to six months. Zach will have further treatment for his tumours but this will be done through day care. He will be having more intrathecal chemotherapy and a course of retinoic acid, which causes cancer cells to differentiate or mature. A cancer cell is immature i.e. it is not an eye cell or a brain cell. This course of acid should force any remaining cancer cells to change and no longer be a threat. It is used in a wide range of cancers and there is good evidence to support it. This is administered orally so we can give it to him at home. Again it comes with side effects. It can cause the skin to become dry and the lips and mouth in particular. Regular vitamin E cream does help to reduce these.

We are now at home enjoying the nice weather we have been having. Looking back at the journey we have been on it hardly seems real now to look at Zach playing. He is a little behind in his development but this is understandable considering where he has come from. We have been through the extreme highs and lows of paediatric oncology and unfortunately some of the kids we have met along the way are no longer with us, but the outlook for Zach is much better. It was hard to be overtly positive about the future, but now we are looking forward to a typical British summer with some days away, the occasional barbeque and dodging the rain. For some this is something to whinge about, but for us it is a dream come true.

 

On the fundraising front it has be a feast of accomplishment. “Nae farrer” Zach’s Granda (Graham) managed to set a new and first pb at the Baker Hughes 10k in Aberdeen by completing the course in under an hour in 59mins 24 secs. His granny (Margaret) and great Aunt (Carol) also completed the course in 58 mins 31secs and 1hr 7 mins respectively so well done to all. 5 (AC) Sqn have continued their summer of sport. Personnel who are currently deployed managed to complete the journey back to the UK in the Gym. A distance of over 7500kms in 49 days. Thanks to all those who took part in this epic show of physical prowess! Kaf Whiteman tackled the tour of the Midlands ,cycling his Raleigh chopper from Skegness to Nottingham, a distance of 98 miles in a respectable 10hrs. 2hrs of this were stops ,so taking that into account along with a couple of wrong turns and he had to replace the card board that was wedged in his brake callipers, giving it that distinct motorbike sound so he did very well indeed, Thanks kaf.  There is a further programme of events to come so watch this space.

Hello again

well since we last spoke, which has been some time...sorry, Zach has managed to get his appetite back. he is drinking lots of milk but isn't really into eating solids yet. he did manage a few weeks without his nasal gastric tube as some of you might have seen in the pictures on facebook, the mountain of drugs he was on after getting out of PICU has been reduced to a quarter of what he was having.

so whats been happening with Zach's treatment? we were in Birmingham on the 24th March for a stem cell harvest, which is basically a bone marrow harvest. Zach was on a drug called lenograstim  (GCSF) which encourages your body to produce stem cells. normally you are on the drug for up to two weeks before you have enough to harvest. Zach being Zach set a new record of nineteen days on GCSF before he had enough cells to harvest, but they got a good amount. 2 would be the minimum required and they got 2.5 so it will help him even more after his high dose chemotherapy. Harvesting is a painless task which involves Zach being hooked up to a machine via his Hickman line. his blood is passed through the machine which spins out the cells in a centrifuge and puts back everything else. it took 5 hours to do.

as I write this we are back in hospital and Zach has had his first dose of High dose Chemo. it takes six days to get through the high dose protocol then he has two days to recover before an ambulance transfer to Birmingham to get his stem cells back, then we have to wait for the stem cells to re-establish themselves in his bone marrow and his blood count to recover. this can take six weeks in total but as we have been hearing the stem cells significantly reduce that to about three weeks so we will have to wait and see.

the fundraising is still going strong, our justgiving page has gone over £5,500 thanks to some large donations from friends and family. My squadron completed the Lincoln 10k and they have raised £3,250 so far. they have other events planned for the future so watch this space. A big thanks to RAF Wittering for raising over £700 in cake sales. Defending the realm is hungry work, thanks lads and ladies.

I will be updating more as I will have some spare time now we are inpatients again. It has been great to get home for a few weeks and do some of the normal things like getting back to work, running and doing a bit of DIY. Hayley managed to celebrate her birthday at home which was good and we got out for a meal with friends and we were away from the hustle and bustle of hospital.

speak to you again soon

Hi again from Ancaster

That’s right we’ve been home!!! We managed to get a couple of weeks at home while we waited for Prof Grundy to get information from Birmingham Children’s hospital on Zach’s current health. We went to Birmingham on 12 - 14 Feb. We were there to get a bit of an MOT on Zach, and to get his retinoblastoma re-assessed by the team. The results were that the tumour in his eye is pretty much dead and any viable tissue they think is present can be treated with a laser. Which just leaves the brain tumour…After the MOT, Zach was assessed as fit enough to be put back on treatment and high dose chemotherapy?.

We returned to the QMC on the 23rd of Feb to restart Zach’s treatment but his lymphocytes were too low and we were sent home again on the Wednesday while we waited to hear from an immunologist. These are the white blood cells which fight viruses. These have been low in Zach since November, and Prof Grundy isn’t sure if it is a hangover from the spell in intensive care, so we should find out soon. When we get the nod, Zach will be put on an 80% dose of his previous chemo treatment and what happens next will depend on how he reacts.

We were called back in on the 4th of Mar to start treatment and fortunately Zach has tolerated the 80% dose. We are back at home waiting to go to Birmingham so Zach can have his stem cell harvest. He is due to have another MRI at the end of March to assess what effect this treatment has had. What we have to remember is that in the 34 days Zach was in PICU, he didn’t have any chemo and his tumours didn’t get any worse or spread. They are reactive so we just have to keep everything crossed.

My squadron (5 Army Co-operation Sqn) have been putting a lot of effort into organising fund raising events to try and raise a bit of cash for CLIC Sargent. This is the charity that run Billy’s house across from the Queens Medical Centre. We have used it extensively whilst we have been in patients for our own use and for family. It helped alot particularly when Zach was in PICU as we had family coming from all over to see us. In there first event, there is a team running the Lincoln 10k; they have a just giving page https://www.justgiving.com/teams/SentinelEngineeringCharities2014 and have set a target of £1000.They also very kindly took Hayley and I out for a curry and a few drinks in Lincoln. It was a much needed evening of respite and it was good to see everyone again and for Hayley to put some faces to the names she has been hearing about.

Hayley’s WO was also able to meet up with us. RAF Coningsby Personnel Management Squadron is in the process of raising funds for the PICU in the Queens Medical Centre. The aim is to raise enough money to help buy a new bed for the unit. While Zach was in intensive care, he was put on a trial bed. It has four movable plates which mean that rather than try and man handle him every few hours to stop him getting sores or help with ventilation nurses and doctors just need to push buttons and the bed does the rest. It also has clear plastic sides instead of the horrible bars on a standard NHS cot. It has lots more benefits but you get the gist. they will be holding events in the near future so watch this space!!!

Well a massive thanks to everyone for all the support we have been getting, be it running 10k's, replies to the blog, donations to just giving pages, or simple texts or emails asking how we are getting on. We aren’t religious people but some of you have been lighting candles for Zach, which we find very touching thinking that they are burning for Zach somewhere. 

Speak to you all again soon.

Hi again from Nottingham,

We are now back on the ward. This is our second attempt at moving down the scale of treatment. We were initially moved back to the ward from the high dependency unit, on Friday 24^th Jan but by the early hours of Monday morning Zach’s oxygen requirement had gone up and the nurses couldn’t keep a close enough eye on him. On a normal ward its 4 patients between 1 nurse. On the high dependency ward it is 1 nurse between 2 patients. Whilst we were in intensive care cardiologist’s found a hole in Zach’s heart which could have been caused by the lung disease. It means that blood “shunts” across the top of his heart. Blood that has come from the body, deoxygenated can pass through the hole and mix with oxygenated blood that has come from the lungs, and vice versa. This means that Zach’s normal oxygen saturation level can be lower.

The hole is present in all babies at birth as a short cut for blood because the lungs aren’t used in the womb and will close normally. Sometimes it doesn’t close or is reopened as a result of illness. It was probably caused by the pulmonary hypertension which was caused by the “stiffness” of Zach’s lungs. Pulmonary hypertension is when the pulmonary artery becomes narrow meaning the right side of the heart has to work harder. Zach is now on sildenafil which some of you who probably wouldn’t admit; know it as the gentleman’s friend…Viagra. This increases blood flow which is helping with the blood oxygenation and captopril which helps his heart pumps better. Zach is still being weaned off his sedatives. This means that he can get quite upset when he is due his next dose, as you would expect with someone who is addicted to drugs.

Zach will be going to Birmingham children’s hospital for a MOT in a couple of weeks. Along with this we will hopefully get some time at home together. We haven’t been home since the 6^th Dec so it would be nice to get acquainted with home again. I think we have now spent more time in hospital than we have in our new house.

That’s about all our news thankfully; boring is good as we’ve found out. We would like to apologies to our French followers, who were unfortunately missed on our list of countries the blog is read in, in our last post. Do you know the difference between the French and toast… you can make soldiers out of toast.

On that note we will bid you fare well, till the next time au revoir!

Zach is out of intensive care!!!!!

After 34 days Zach has finally made it off the ventilator and out of the paediatric intensive care unit. It has been a long slog, but we are glad to be on the high dependency unit. It is a well needed change of scenery and a big step down. Now Zach has to share a nurse with another patient, and we get to step in and start taking up some of the responsibility for his care. The constant noise of machines and the horrendous atmosphere are a distant memory now.  As he has been sedated for such a long time with strong drugs, (morphine for pain relief and sedation, midazolam for sedation, rocoronium as a paralysing drug during invasive ventilation, fentanyl to replace morphine as it’s stronger and is used for sedation, clonidine which helps with withdrawal and is used as sedation), Zach has to be weaned slowly to stop him going cold turkey. He does suffer a little with withdrawal, he sweats at times, is irritable, and his sleep pattern is completely shot to pieces. He spends quite a lot of time just staring, but does follow you if you step into his line of sight. It’s just a matter of time before they can wean him safely and he returns to his normal smiley self. The doctors are sure that he doesn’t have brain damage as a result of the ventilation, Zach has had an MRI scan and the Neuro radiologist couldn’t find any evidence of brain damage and it showed that the tumour in his brain had shrunk slightly again. He will be receiving some chemotherapy this week, but it will only be the chemo that is injected via his Omaya reservoir in his head as it isn’t toxic to the rest of his body. The rest of his therapy is still a bit up in the air at the minute. Ira Dunkel who is an Oncologist in the states, gave our professor Zach’s original chemotherapy protocol. He is now helping to work out where to go next. Zach will receive some systemic chemotherapy but the amount is still to be decided and will be very much guided by Zach’s state of health. They are sure that Zach was just unfortunate to get a bug whilst he was immuno-supressed, but none of us want to end up back in intensive care if we can help it. To gauge how much ventilation a patient is on; doctors use a system called the “oxygen index”. A normally ventilated person should be between 10 and 20, with a threshold index of 40. That is the point when doctors get nervous. Zach’s oxygen index at his worst was 70, which gives you an idea of the severity of the disease in his lungs and the aggressiveness of the ventilation he needed to get gaseous exchange to happen. Today as I am writing this he has a nasal prongs on which delivers about 0.5l/min of oxygen with no pressure. He did have a full face mask which allowed him to stay on a ventilator without a tube being inserted into his windpipe. The doctors could give him pressurised oxygen enriched air, and he didn’t like it being removed as he was still dependent on the pressure to help his breathing, but on Saturday all that changed. We took off his mask at about 1030 to give his face a wipe and stop him getting sores. He didn’t panic in the slightest, so it was decided to keep it off and instead waft oxygen across his nose and mouth and it worked. Four hours later he was moved along with a mountain of drugs to the high dependency unit, which is only next door. It is a very different beast. We have our own bay, privacy, no more beeping machines. We can have a cup of tea by his bed. We have a TV in his bay so we can relax with him. There is more of a day and night routine, not that Zach is interested in that yet so will no doubt take him a few days to get back into the swing of things. We can’t sleep on the ward with him but we are welcome any time of the day or night. We will have to try to rest as much as we can as once Zach is feeling better he won’t want to be lying in bed all day!

The blog is becoming ever more popular. It has had over 9500 views since we started it. It is viewed in America, Canada, Afghanistan, Switzerland, Germany, Cyprus, Norway, Australia, Denmark, Spain and even Aberdeenshire.  We would also like to thank you all for your thoughts and prayers over this dreadful time. They have all helped in some way as Zach is now known as the “Christmas Miracle” in the intensive care unit.

Keep reading and we will speak to you again soon.

Happy New Year!!!!!

 

As you’re about to read, ours wasn’t very happy and Christmas wasn’t very merry either. The second week of December was pretty normal. Zach was on a very small amount of oxygen as the doctors thought that he had a virus which he would get over himself and the oxygen was there just to help with the oxygen saturation (sats) in his blood which was lower as a result of the virus. On the evening of the 15^th Dec Hayley and I sat down to a Chinese from one of the local takeaways and put Zach to bed. During the night Hayley noticed that Zach was making a noise when he was breathing, which is usually a sign that he’s finding it a bit more difficult. The doctors that were on that night came and had a look, and weren’t too concerned although they did take a chest x-ray. Zach was supposed to be going to Birmingham Children’s Hospital for a stem cell harvest that day and they were happy for him to still go. A quick chat with nurses soon changed that and after a phone call to one of Zach’s consultants and they all decided not to send him, just as well. Around the same time, Hayley started complaining of not feeling too well. She ended up having to go and speak to hew down the big white telephone. Sickness had been doing the rounds on the ward and it would appear that poor Hayley was its next victim. Well morning came and Zach wasn’t feeling too well, neither was Hayley, so she was sent home by the ward to tough it out and left Zach and I to stay on the ward, this being the first time Hayley had had to leave Zach. Professor Grundy came to see Zach and had a look at his x-ray. He diagnosed bi-lateral pneumonia. Zach would have some samples taken from his lungs the next day to help further diagnoses and treatment. As the day went on Zach grew more tired and uninterested. Then at about 1730ish the doctor was called again to take another look at Zach. His oxygen requirement was increasing and he was struggling to maintain his oxygen saturation level. She had a look and an oxygen mask was put on him which he didn’t like too much. Then he started to really fight and breathing was becoming more and more difficult. They took another chest x-ray and his condition had worsened dramatically. It showed a lot of fluid build-up. An Anaesthetist was called and after a little hesitation from the on call doctors, he decided that Zach needed to be intubated, which is when a tube is put down in order to maintain his airway. This would reduce the stress he was going through and stabilise him. As this was being done, the doctors called the Paediatric intensive care unit (PICU) and it was decided that Zach would be transferred. Once the ball was rolling it was a very slick operation although something no parent ever wants to see. Zach was anesthetised, intubated and moved in the space of about 40 mins. When he was anaesthetised his lungs collapsed quickly and it took a while for them to “re-recruit” or inflate the collapsed parts.

 

Once through on PICU he was put on a type of ventilator called an oscillator. This works the lungs differently from a conventional ventilator by inflating the lungs and keeping them inflated, and just panting them rather than doing breathes as you would normally. It is gentler but looks disturbing as it makes you breathe at about 300 breathes per minute. This would help to clear the fluid from the lungs and reduce the build-up of CO2 that had occurred. We were sat down with the PICU consultant and one of Zach’s consultants and they explained that he was critically ill and the next 24hrs would be difficult. Through the night Zach had made some progress and they managed to switch Zach on to a conventional ventilator. The next day things looked like they were heading in the right direction. The PICU doctors weren’t entirely happy with progress that Zach had made but he was more stable. They diagnosed him with RSV (Respiratory Syncytial Virus). This is a common virus and would make adults feel a bit rough with a cough and runny nose, but often puts healthy infants and babies in intensive care. As Zach was immune-supressed it was hitting him hard. He made very slow progress and had to be put back on the oscillator a few days later, as his CO2 was starting to build up again. The progress he had made then started slipping. The doctors then started looking into ECMO. This is a lung bypass machine, which is only available in four hospitals in the UK. It is a very specialised piece of equipment which would oxygenate Zach’s blood for him, allowing his lungs to rest and repair. It is very high risk as it involves putting one or two large cannulas into a vein in the neck. The blood is thinned to allow it to pass through the machine. The criteria that children have to meet are very specific because of the risks involved. 30% of children put on ECMO end up with brain damage as a result of bleeding in the brain. Some children don’t survive due to other complications. Well the first time the ECMO service was asked, they refused Zach. It would now appear after further discussions with the Zach’s doctors that certain staff within the ECMO service think that all children with cancer that are put onto ECMO die. So they had to find another way of getting Zach better. They tried different drugs, putting him in different positions, giving him physiotherapy to try to bring up the secretions in Zach’s lungs. Zach made some progress then stopped again. The ECMO service were contacted again, more tests were carried out and they came back….no. then Zach made some more progress and the ECMO service were asked again….no. this time they thought that he would be more at risk being put on ECMO than if he was treated conventionally. So Zach’s doctors carried on and then he started slipping backwards. One evening ended with a doctor running down the ward towards us saying that she thought Zach may be giving up as his sats had dropped significantly during a session of physio and they were struggling to get them back up, and that if we wanted to come and stand by his bed if we thought it would help. This is the sort of news that you normally get before you wake up in a pool of sweat, but this was real and happening. We stood there as Zach slowly recovered but it highlighted to everyone how ill Zach was. The ECMO service was contacted again…..no. Zach then started to slip again. We were sat down and told that they would try three more drugs on Zach. The third would be surfactant, which is a fluid used to treat ante-natal babies with under developed lungs. It has to be squirted down his ventilation tube. Given Zach’s situation and that he was on the maximum amount of ventilation the doctors said that if he deteriorated to the point where he would need resuscitation then they could not help him any longer, and they would preserve his dignity, unplug him from all his machines and drips and pass him to us, so that we could cuddle him. This is the most disturbing thing that we’ll ever probably be told. The surfactant would be the last thing they tried. By about 1 am it was time to try the surfactant. They squirted it down, it was quite disturbing as you can imagine swallowing something and it goes the wrong way. Despite his sedation poor Zach was coughing and retching, but after he settled his sats came up a bit. It takes a long time for surfactant to work. It did seem to have a bit of an effect but then he started to slip again. We were advised to call our families. This we did and by the evening of the 27^th Dec everyone was here by Zach’s bed. Come the early hours of the 28^th the nurse looking after Zach woke us up as Zach was starting to loose colour and she feared that this maybe him letting go. Everyone rushed to his bed side and we hoped and prayed and cried. His sats were dropping, along with his blood pressure and heart rate. Then they stopped dropping, and started climbing very slowly. By midday everything was looking a bit more normal but he was still critically ill. The doctors were starting to run out of ideas.

 

ECMO were contacted again….this time Glasgow said they would consider him. He needed more tests first. They scanned his heart and found a small hole. This is quite normal as Zach’s heart was working hard trying to pump blood around his lungs. After further consideration they came back…….no. He was too high risk as he had been on a ventilator too long. The ECMO option was now out. Zach would have to do this on his own. In the meantime he had been put on a gas called Nitric Oxide which occurs naturally in the lungs and helps be improving gaseous exchange. The amount he was on had gone up and up and up. The Professor in the PICU had managed to speak to a doctor in Los Angeles, who is a leading expert in RSV. He suggested putting Zach back on to a conventional ventilator, starting a 28 day course of steroids, along with sildenafil, which is found in Viagra, and would help by increasing blood flow around his lungs and give him time. The junior doctors had become fixated with Zach’s CO2 levels during his treatment and in order to treat it had been turning up the pressures on his oscillator, but because Zach’s lungs were in such a poor condition they had been chasing figures which were unachievable in his condition and the hole in his heart made this worse. So the PICU Professor, who is also a respiratory consultant, sat them all down and drew up a plan of how Zach’s treatment should go. Zach was put on a conventional ventilator and his new drugs started. The results were almost immediate.

 

Zach has now recovered to the point where they will be able to take him off his ventilator and wake him up, which is great considering he was on four drips and eight syringe drivers, all of which were running almost continuously as well as all the machines he was connected to. It has been a complete rollercoaster of emotions. It is something that you often see on TV or read about but never expect to happen to you. It makes you take a good look at everything in your life and puts a whole new perspective on it. The last three weeks have flown by despite the longs hours of waiting for tests and results. You completely lose track of the time and the days. Our next milestone is still to get to Birmingham for Zach’s stem cell harvest and examination under anaesthetic (EUA) of his eye before his chemotherapy starts again and to get him a MRI scan to see how his brain tumour has been getting on without chemo. They have drawn some of his cerebral spinal fluid (CSF) and didn’t find any cancerous cells which is good as it means it hasn’t spread during this episode.

 

Well keep reading and thanks again for all the support be it emails or donations to the justgiving page which never fails to amaze us.

Speak to you all again soon.