I have been busy trying to come up with a plan just incase we end up with an impromptu trip to the hospital.. We are so close to Christmas any issues now would mean we would be in for Christmas Day again. Last year we only went in at lunchtime so the boys had obviously opened all their gifts but now we are worrying how it would all work?
The theory is the other two would have to open their gifts at home without Dylan because they are far too large (and too many thanks to us over compensating for last year) to take with us. We will have to just take a few to the hospital for Dylan to have on the morning from Santa then bring the rest over slowly.
I have packed his main three gifts from Santa into a bag along with the chocolate gifts 'just incase' so they are easy to grab on the way out the door. They are the gifts he cares most about receiving and will keep him plenty busy for a good few hours at least. We always have the emergency suitcase in the car which has clothes for myself and Dylan plus basic toiletries and packets of microwave pasta so I wouldn't have to worry about any of that at least!
Today is potentially our 'worst day' and usually he starts to feel rotten 6 hours after his second dose but the Hydrocortisone has been working well against this lately. We have accessed his other line today as we alternate which one we use each day so any potential bugs in that side would have their effects on his system tonight usually too.. Hopefully this means if we are still at home in the morning then we stand a good chance of avoiding a Christmas admittance.
The boys broke up from school yesterday so we are a good 24 hours clear of any germs from there so far and today we have literally just been for lunch and to some shops, we are avoiding mingling with other people too much this week!! Tomorrow I need to make a quick dash to Asda and the boys could really do with a haircut but then we will be hibernating in the house until New Years Day I think.
Everybody is in fairly good spirits and excited so let's hope nothing spoils it for them this year. I personally will take whatever life throws at us but I really think the boys deserve a happy Christmas this year after everything they have been through.. <3
Wednesday 21 December 2016
Sunday 18 December 2016
The Christmas That Shouldn't Be..
T-minus one week to Christmas, in fact this time next week it will all be over.. but I am just waiting for something to go wrong.
My husband is on almost constant late shifts because of his job and the busy time of year. I've taken to going to bed at 8/9pm ish in my clothes (just incase) and attempting some form of broken sleep until I know he is on his way home and then I relax a little..
I've gone from checking his sats 3/4 times a day to double that or more if I'm having a particularly bad day. Checking his temp more than usual and now checking his line clamps, that are VERY securely taped, over and over again. I think the closer we get to Christmas Day, the day this journey really began for us, the harder it becomes to put the past behind us. Hopefully this will fade away in the new year, but that also brings it's own milestone dates.
Somebody once wisely said, this will always be the case in some way. There will always be another milestone, another important date. Even after treatment may finish it'll become.. 'six months post treatment' then 'one year, 'two years', etc. There will always be the fear of relapse. Some relapse almost instantly, others take years. The highest rate is usually within the first three years but Histio is the Honey Badger of all diseases and does whatever the hell it likes! It may come back in the same spot, it may pick a whole other organ to attack. It may never return.. nobody knows.
Those are the things you cannot worry about. You could be hit by a car crossing the road just as easily. If you spend your whole life worrying about the future it ruins the moments. The past also has a nasty habit of telling you, 'you should have done this' or 'what if you'd done that?' and those voices are a little harder to ignore. We constantly question whether there were any signs of symptoms leading up to Christmas Day and that is what I am doing a lot right now and making sure we aren't missing any new ones that signal any issues. I do not want an ambulance ride for Christmas this year please Santa.
Bloods tomorrow morning, these are being done at nursery again. I will be checking his clamps are taped properly the second he walks through the front door!! Then nursery again on Tuesday but then they break up so straight off to the hospital for Chemo at lunchtime and we will be taking treats with us to give out all being well. After it is done we will bring home his last three doses for 2016 which the community team will give the rest of the week.
We are hoping for no infections, good counts, no reactions to chemo or heaven forbid a collapsed lung (it'll be 8 months without a drain if we make it to 5pm on Tuesday).
I know lots of parents are spending this Christmas at the hospital this year, we did last year and I would like to avoid it if possible. BUT I also know a lot of parents are spending this Christmas with a child in heaven and my heart goes out to them. I feel a deep pain for them that this time last year I wouldn't have understood. Everybody feels sad when they hear of a child gaining their angel wings but as a mother whom has stared into that abyss from the edge I feel so much in my heart for their parents that it brings me to tears and I cannot even comprehend their strength. My heart goes out to all of you!
All I want for Christmas this year is a relatively happy and relaxed day with my beautiful family. Preferably all happy, healthy (ish) and in good spirits. If we end up in the hospital it's fine, it wouldn't be ideal but it's fine in the grand scheme of things because let's face it... it could be worse and it so very nearly was.
My husband is on almost constant late shifts because of his job and the busy time of year. I've taken to going to bed at 8/9pm ish in my clothes (just incase) and attempting some form of broken sleep until I know he is on his way home and then I relax a little..
I've gone from checking his sats 3/4 times a day to double that or more if I'm having a particularly bad day. Checking his temp more than usual and now checking his line clamps, that are VERY securely taped, over and over again. I think the closer we get to Christmas Day, the day this journey really began for us, the harder it becomes to put the past behind us. Hopefully this will fade away in the new year, but that also brings it's own milestone dates.
Somebody once wisely said, this will always be the case in some way. There will always be another milestone, another important date. Even after treatment may finish it'll become.. 'six months post treatment' then 'one year, 'two years', etc. There will always be the fear of relapse. Some relapse almost instantly, others take years. The highest rate is usually within the first three years but Histio is the Honey Badger of all diseases and does whatever the hell it likes! It may come back in the same spot, it may pick a whole other organ to attack. It may never return.. nobody knows.
Those are the things you cannot worry about. You could be hit by a car crossing the road just as easily. If you spend your whole life worrying about the future it ruins the moments. The past also has a nasty habit of telling you, 'you should have done this' or 'what if you'd done that?' and those voices are a little harder to ignore. We constantly question whether there were any signs of symptoms leading up to Christmas Day and that is what I am doing a lot right now and making sure we aren't missing any new ones that signal any issues. I do not want an ambulance ride for Christmas this year please Santa.
Bloods tomorrow morning, these are being done at nursery again. I will be checking his clamps are taped properly the second he walks through the front door!! Then nursery again on Tuesday but then they break up so straight off to the hospital for Chemo at lunchtime and we will be taking treats with us to give out all being well. After it is done we will bring home his last three doses for 2016 which the community team will give the rest of the week.
We are hoping for no infections, good counts, no reactions to chemo or heaven forbid a collapsed lung (it'll be 8 months without a drain if we make it to 5pm on Tuesday).
I know lots of parents are spending this Christmas at the hospital this year, we did last year and I would like to avoid it if possible. BUT I also know a lot of parents are spending this Christmas with a child in heaven and my heart goes out to them. I feel a deep pain for them that this time last year I wouldn't have understood. Everybody feels sad when they hear of a child gaining their angel wings but as a mother whom has stared into that abyss from the edge I feel so much in my heart for their parents that it brings me to tears and I cannot even comprehend their strength. My heart goes out to all of you!
All I want for Christmas this year is a relatively happy and relaxed day with my beautiful family. Preferably all happy, healthy (ish) and in good spirits. If we end up in the hospital it's fine, it wouldn't be ideal but it's fine in the grand scheme of things because let's face it... it could be worse and it so very nearly was.
Saturday 10 December 2016
Flashbacks & Nightmares
For those that have suffered a traumatic event it is often not worry of the future that keeps them awake at night, but flashbacks of the past..
Of course the worry of the future is still always there but in our heads we can rationalise that. We can tell ourself things will be ok and talk ourselves through all the reasons why or the proof of improvement. You see those suffering, loosing their fight, living in pain everyday and you can tell yourself to be thankful and grateful because every day is a blessing and others out there have it so much worse.
But the past has a way of creeping up on you, catching you off guard, and sometimes taking your breath away and setting your heart racing. You cannot control that, you cannot talk yourself down from the ledge because sometimes you don't know what put you there. You just need to ride out the storm..
For me personally the flashbacks and nightmares are getting worse as we approach the holiday season. I think this is because it is where it all began for us and the fact that we have been told numerous times that Dylan wouldn't be here this Christmas. Even back in January, before there were any 'real' life threatening moments we were advised he may not see out this year.
Yesterday I was in the kitchen making ham and cheese sandwiches to take out with us.. All the Christmas decorations are up like they remained throughout early January last year.. I suddenly got a flashback of making ham and cheese sandwiches to take to the hospital D ward and put in their sandwich toaster! Sounds silly and just like a normal memory right?.. but it caught me completely off guard and instead of feeling like a memory it felt as if I was back in that moment and sheer panic came over me and my heart started racing. Until I heard Dylan playing in the lounge which snapped me out of it!
This happens at night, most nights.. I will dream I am asleep in the parent room around the corner from PICU and I'll wake up in a cold sweat panicking that I've got to get back to his bedside until my eyes adjust and I realise I am at home. I also sometimes dream that he didn't make it, like last night. Not a dream that something will happen in the future, it's never ever about the future, it's the past that haunts me. Waking me up scared from a dream that he didn't make it, looking around the room, checking he is in his bed, realising it is just a dream then falling back asleep and slipping straight back into that same dream. It is exhausting..
Of course Dylan is doing great. There is no clinical reason that I should be worrying about him at this moment.. I don't always post updates at the moment because it is a lot the same week in week out. Bloods on a Monday each week then one week of Chemotherapy which runs Tuesday to Friday now then a two week break. Sometimes his blood counts are normal, sometimes they are low. Sometimes he is tired, sometimes he feels sick. He has had numerous viruses (thanks nursery and school) but is handling them surprisingly okay. We haven't needed to go back on any oxygen in almost three months. Sats are good, appetite is mostly good. He is having physio still and progressingly slowly but surely. He is settled into nursery and doing well. These things all help keep my anxiety about his future in check and live in the moment, blissfully! I am a realist and I know things can change and something small could tip the scales but life is about living and not letting the worry of the future control you. I just wish the past would leave me alone now!!
Of course the worry of the future is still always there but in our heads we can rationalise that. We can tell ourself things will be ok and talk ourselves through all the reasons why or the proof of improvement. You see those suffering, loosing their fight, living in pain everyday and you can tell yourself to be thankful and grateful because every day is a blessing and others out there have it so much worse.
But the past has a way of creeping up on you, catching you off guard, and sometimes taking your breath away and setting your heart racing. You cannot control that, you cannot talk yourself down from the ledge because sometimes you don't know what put you there. You just need to ride out the storm..
For me personally the flashbacks and nightmares are getting worse as we approach the holiday season. I think this is because it is where it all began for us and the fact that we have been told numerous times that Dylan wouldn't be here this Christmas. Even back in January, before there were any 'real' life threatening moments we were advised he may not see out this year.
Yesterday I was in the kitchen making ham and cheese sandwiches to take out with us.. All the Christmas decorations are up like they remained throughout early January last year.. I suddenly got a flashback of making ham and cheese sandwiches to take to the hospital D ward and put in their sandwich toaster! Sounds silly and just like a normal memory right?.. but it caught me completely off guard and instead of feeling like a memory it felt as if I was back in that moment and sheer panic came over me and my heart started racing. Until I heard Dylan playing in the lounge which snapped me out of it!
This happens at night, most nights.. I will dream I am asleep in the parent room around the corner from PICU and I'll wake up in a cold sweat panicking that I've got to get back to his bedside until my eyes adjust and I realise I am at home. I also sometimes dream that he didn't make it, like last night. Not a dream that something will happen in the future, it's never ever about the future, it's the past that haunts me. Waking me up scared from a dream that he didn't make it, looking around the room, checking he is in his bed, realising it is just a dream then falling back asleep and slipping straight back into that same dream. It is exhausting..
Of course Dylan is doing great. There is no clinical reason that I should be worrying about him at this moment.. I don't always post updates at the moment because it is a lot the same week in week out. Bloods on a Monday each week then one week of Chemotherapy which runs Tuesday to Friday now then a two week break. Sometimes his blood counts are normal, sometimes they are low. Sometimes he is tired, sometimes he feels sick. He has had numerous viruses (thanks nursery and school) but is handling them surprisingly okay. We haven't needed to go back on any oxygen in almost three months. Sats are good, appetite is mostly good. He is having physio still and progressingly slowly but surely. He is settled into nursery and doing well. These things all help keep my anxiety about his future in check and live in the moment, blissfully! I am a realist and I know things can change and something small could tip the scales but life is about living and not letting the worry of the future control you. I just wish the past would leave me alone now!!
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