The End is Coming

On Friday (or..Saturday….hmm…time is blurring for me) it was made known to John and I that Mathew has a couple of weeks left at the most.

His pain meds are increased daily and how long he will wake up is not clear. I wish to spend every waking moment he has, with him. So I packed my bags this morning and am moving in with him until the end. The palliative care ward provides every necessity of home so the only reason to come back is for our kitty.

If John wants to keep coming home then I know he will give Gimley some loving otherwise we have family more than happy to help us.

Family and friends dropped by the hospital to say good-bye this weekend. I love them so much and for taking the time and love to make special trips to see Mathew. It is the hardest thing to do, to say good bye to someone you love, and I hope the privacy I gave them at the end of each visit was enough. Thank you, thank you for the love and devotion you showed to Mathew in his life. You will likely never know the impact you had on making his life wonderful. He loved every one of you.

Mathew still thinks he is coming home and we will do nothing to dispel that notion. He understands he can’t come home until the pain is managed and we are 9 days at the hospital and his pain increases every day. He is so thin it is heartbreaking and he is so weak he can’t sit up.

I don’t know if I will be able to blog from the hospital; they are having problems with their wifi. When I did blog when Mathew was in cancer treatment, from the Oncology floor, my iPad wasn’t very accommodating. I will be updating Facebook for those who can “see me” there.

We do not believe in God and in fact, Mathew kind of kicked the spiritual advisor out of his room (John was there, I wasn’t. It was funny though). If praying comforts you then please comfort yourself. Please do not pass messages of prayer to us if you know of our practise/belief. A “praying for Mathew” is fine and I understand the heart is coming from ~ it is enough and done with love. Other than that none of us wish to be preached to. Those who love us know this well enough; it is more meant to some individuals who feel it is in their best interest to try to “save” Mathew or encourage us to find God in this “hour of need”. I respect you and know faith comforts you. Please respect us and know we have our own comfort.

Words fail me. I cannot convey how we are all feeling. The nurses and doctors adore Mathew and he is very happy with them and their care (as are we). It is a terrible, terrible thing to lose a child and there is simply nothing that can express the pain.

Now I must go to my son. I was with him when he came in to this world and I will be there for every minute during this time he leaves. Love to you all

 

 

 

 

 

 

 

 

 

 

 

 

Pain Flare? Maybe

Mathew’s leg pain increased significantly through this morning. By the time John arrived, around 1 pm, the doctor had already approved an increase in Dilaudid. Over the course of 24 hours the increase would compare to 50mg morphine (a total over 24 hours). He is on a small/moderate dose of Dilaudid and there is room to increase the dose by quite a bit. Another option is to add other drugs to the mix.

Mathew’s nausea has decreased significantly and he had one shot of Halidol (sp?) in the last almost 24 hours. It turns out the medication is NOT Haldon as I thought, but some drug used in psychiatric wards. Yay. It was discovered one of the other benefits of this drug is to manage nausea hence Mathew getting it.

It was lovely to see Mathew much sharper today. Yesterday his eyes rolled in his sockets; I’ve never seen that before! They twirled and his pupils couldn’t focus (contract/expand) very well. Today his eyes were normal and the sly little fox piped up with one of his infamous remarks during the frequent nurses’ checks. His witty personality peeked through here and there.

Mathew did say, during one of our little conversations, that he “is coming to the end of the line”. Yes that does refer to his remaining life. He and I talked a little more about palliative care and why he was there. He needed reminding that he came for pain control and he agreed it was the best decision. This increased pain today could be the “radiation flare” that happens as a side effect. The doctor pointed out it could also be progression of the disease along his spine. Yeah; wouldn’t want that nasty ol’ cancer to stop growing for a day, would we?

Today marks the first day John and I are implementing a kind of visiting schedule. If Mathew was healthy he would love company to visit and chat. The truth is, he is exhausted and in a lot of pain. He sleeps pretty much 24 hours a day ~ he is dreaming for the first time in quite a while, which pleases him and his doctors. It means he is getting much needed rest. We also understand family and friends wanting to see him. So we decided that today, Friday, visitation will be from 6-8 pm. The lounge is next to Mathew’s room and if there ends up being a queue then visitors can gather in the lounge. Only one or two people will be allowed in at once. The visit will need to be done in a quiet voice because noises bother Mathew a lot. He may or may not talk but probably not. He knows you are there he is just too exhausted to speak. Lucky you, visitor, your talking companions will be either John, myself, or both of us!

This arrangement keeps Mathew’s wellbeing front and foremost and all of us have his best interests’ at heart. Mathew agreed to this with the condition he not have to talk or do anything.

Out of Towners will have special consideration due to travel and time constraints.

This also addresses the need for John and I to focus mostly on Mathew and to keep ourselves energized (ha ha ha). When there are visitors it is hard for us to devote our everything to our son. We need the quiet and space to spend time taking care of Mathew and ourselves. This is another step in the nearly 4 year journey this cancer has taken us and it is the most difficult.

We recognize and thank every one who keeps Mathew in their thoughts. Be it from far away or close by it doesn’t matter; we know he is loved and so does he. Being this ill does not give him energy to think about anything or anyone other than himself and trying to rest.  Should Mathew recover some energy then his focus will direct outwards and thoughts of his iPad and family and friends will become important to him again.

The exception to visiting hours are exempted for his Nana and Poppa. They are his grandparents and get special privileges just by being his grandparents.

Thank you everyone for helping us work towards a comfortable and quiet environment for Mathew to get professional and expert help at this most difficult of journeys. I will let you know when (and if) he is able to come home. He is in the best of care and he knows it.

Now, I’m going back for an evening visit before I return home for the night.  Please send some spring weather our way. These cold, rainy days are OVER RATED!!

 

 

 

 

 

 

 

 

 

 

 

Radiation is Done

Radiation was done yesterday. Mathew ended up having his right shoulder radiated along with his right hip and top of right femur. I wasn’t present when he went down for the markings on Tuesday. I was surprised when the radiation staff prepped him for his shoulder when we went down yesterday. They asked for Dr. Naz to see me which she did. She explained that the shoulder fractures easily and Mathew cooperated so well the day previously, that she decided to do the shoulder too.

I asked Dr. Naz how big the tumours were but still got a blurry reply. The radiation focussed on an area, which calculated an area for clear margins around the targets plus a little fudge factor in case Mathew moved during treatment. Normally special precautions are taken in the form of some kind of mold to hold a patient still and exactly in place. Mathew only had a rough form that was manually manipulated to hold his legs in place. The table he lays on is quite narrow and there isn’t room for his arms to rest naturally at his sides.

Back to the tumours though; they are centimetres in size. I imagined millimeters so was surprised. Additionally the doctor mentioned several tumours in the right hip/femur location…. okaaaaay…. I knew there was one on the right ilium and another at the top of the femur but knew nothing about SEVERAL. I am a detail-oriented person and it bothers me when things that I consider to be significant are not shared. The radiation to Mathew’s hip/leg area was done as one area, size approximately 24 cm by 18 cm or so. That was significantly different than me imagining two tiny areas. The shoulder area was 14 cm by 10 cm or so. Shock clouded my hearing and memory.

It was difficult reliving radiation, as Mathew had it to his spine 3 years ago. Even harder? Mathew saying goodbye to the staff he recognized on the path there and back. We bumped into a few of the Oncology nurses who treated him and that tore me in half. The farewells have started and the hospital background doesn’t make it any easier.

Mathew asked me yesterday, when he could go home. He mentioned he really likes the nurses but not THAT much to stick around. Speaking to the doctors we believe another week or so, if all goes well. The pain from radiation ~ should it afflict him (please don’t. Please!) usually happens at the 3 or 4 day mark. The pain lasts for several days before it disappears. The doctors want Mathew to stay in the hospital during this period to ensure proper pain relief should this common side effect show up.

There are also other things going on. Mathew hasn’t woken up for any length of time since switching to Dilaudid. This drug is 5x more powerful than morphine which could lend to his sleepiness. It could be pain relief giving his poor body the rest it needs. Mathew is still fighting nausea and is receiving Haldon every 4 hours for relief. He has a butterfly needle in his arm so the injection goes into the connector piece rather than him receiving a new shot every 4 hours. He gives the nurses a big grin when they dose him with anti-nausea.

The nutritionist popped in to see Mathew while we were at Radiation yesterday. I laughed when the nurses told us. They did tell the nutritionist there isn’t any point in coming back but apparently she insisted she will. I wonder if it is the same nutritionist as when Mathew had his first chemo treatment and ended up with the wretched stomach tube for feeding? I almost hope she does visit again because I need some levity to this whole business.

Mathew has not eaten a thing since entering the hospital. In fact, for a day or so before he went in he hadn’t eaten either. So all of his meal trays have been turned away, unless there is something on it John or I might want, or if we can set something aside for Mathew should he eat again. I normally just wave it away. Nothing looks appetizing or smells appealing yet.

Mathew is dying. Why would anyone try to force food on him when he obviously doesn’t want to eat? I applaud the hospital in trying to find something Mathew would eat; they offer chits so we can get him a meal from the cafeteria. The cafeteria with very, VERY reduced hours and closes by 2 pm. Still, thank you for the offer. We used it extensively when Mathew’s appetite picked up during his first treatment 3 years ago. There is always someone willing to run out and get Mathew anything, ANYTHING, he wants to eat at basically any hour of the day or night. He has more willing servants at his fingertips right now than the royal family!! So no, we are not worried about him passing on the trays the hospital provides.

I’m not sure anyone realizes that Mathew has not left his bed in about a week now. That, combined with not eating, is going to make him too weak to get out of bed at all. This is something we will have to discuss before Mathew comes home. It is our intention to get him home again if at all possible. John and I switching off every 24 hours but that gyps Mathew and us out of those 24 hours. Time is so very, very precious right now and I despair when I’m away for 24 hours. John and I need the sleep and spend most of the time away catching up on rest. When Mathew is home we can sleep in the same room, pop out for short breaks and then be back with him. He prefers both of us being with him now and I hate that we can’t be.

As of this morning, Mathew is still sleeping or dozing. The entire staff is wonderful. Mathew, as sick as he is, still loves to talk to them when he can, or listen when they pop in to check on him. He likes his room as quiet and as dark as at home. I brought in a small fan from home because air that doesn’t move puts me to sleep or makes me groggy. Mathew loves the sound from home and it keeps the floor noise down. It is a much quieter floor than anywhere else we’ve been and there is none of that continuous beeping of machines that drive you nuts elsewhere. I either read, cruise the web or watch Netflix with earphones on. The hospital is trying out free Wifi for everyone and so far it is working quite well. It is a bit slow when downloading but there were no issues with Netflix.

It is time for me to jump in the shower and then prepare to head back up to the hospital. When it is my turn to come home for 24 hours I am very, very tired. The room has chairs that fold out to a single bed-type-thing but I don’t sleep well. There is still a frequent trail of nurses checking on the pain pump, giving injections, etc. I wake up each time they come in and also every time Mathew moves. He changes position frequently and is still not pain-free. We help him move and change his sheets frequently as he is sweating as profusely there as he did here.

He did provide me another belly laugh though. Mathew was dressed for the ambulance ride; the usual outfit anyone wears outside. At home he was most comfortable in underwear so that’s what he wore. Within 24 hours of being in the hospital guess what he is wearing again? I don’t even know when it happened or how it did, but by golly, he is back to his usual daily wear! He cracks me up.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Trying Dilaudid at the Hospital

Mathew is in Palliative care at the hospital.

It isn’t smooth going there either.

The ambulance trip ended up going well for Mathew. I was permitted to sit in the back with Mathew and that did everything to allay his fears!! The paramedics were sympathetic, kind men who were gentle and explained everything to Mathew. The one in the back with us kept up a conversation about music, so Mathew was in his happy place!

At the hospital Mathew was taken straight up to his room on the Palliative care floor and friendly faces were waiting for us. Mathew’s pain pump was switched to the hospital version (same thing just belongs to the hospital and not Extramural!) and shortly after 5 pm he was switched to Dilaudid.

The starting dose ended up being too low for Mathew and he suffered more than usual through the night, even with the break-through doses. As we were both up all night (although he told his Dad I snoozed pretty good) my mind is a little foggy about specific times…. Around 6 am the doctor switched up the dose and after that Mathew could rest better.

He then started to feel just dreadful and nauseous. Since then he is receiving a lot of anti-nausea medication and is pretty loopy at the moment! He is still getting break-through but he is sleeping today. His whole chest heaves in and out which makes it hard to watch. You can tell breathing is no easy feat for him anymore.

The Radiation Oncologist came to see Mathew this morning. She looked him over then we spoke out in the hallway. In the end we agreed Mathew will receive radiation to his right hip and the top of his right femur. I don’t know how big or small those tumours are; I’ll ask in the next couple of days. Mathew will go down to Radiation tomorrow, for his skin to be marked where the beams will be concentrated. When there is an opening, he will go down again to receive one big dose to those two areas. There is a concern that the cancer eating into the weight-bearing bones can cause fractures. Well, shoot. Hadn’t worried about that until now! The idea of the radiation is to slow progression of the cancer and the mineralization will help strengthen the area. Or, I could have heard everything wrong in my sleep-deprived state and am feeding you hogwash. This is how I remember it though!

There will be no radiation to either area along Mathew’s spine. Either the lower area or the T11-T12 area. Those lesions/spots are close to the spinal cord; in the lining surrounding it and any radiation there would have to be carefully managed over 8 small doses. Mathew won’t do anything beyond one dose. The one area, at the L3, was already blasted with as much radiation as could safely be given him so anything else there is quite a risk.

The possible side effects of the radiation Mathew will receive is possible sunburn look to the skin….and pain. Apparently 4 out of 10 people who get this radiation develop worse pain for 3 or 4 days following treatment before it goes away. Mathew has NOT been told of that potential effect and neither will he be advised ever!!

The radiation, combined with potential side effects, plus managing his complicated pain supports Mathew’s stay at the hospital to a possible week or more… *sigh*…. It is quiet there, he has his own room and the chairs fold out into cots and the staff is very friendly and helpful. Still. It isn’t home.

John and I are trading off every day unless something big comes up at which time we will both stay at the hospital. It is imperative for us to take turns to properly rest, undisturbed at night.

I am updating frequently on Facebook but on here only when I am home.

 

 

 

 

 

 

 

 

 

 

 

Palliative Care Ward

Tomorrow Mathew will be transported by ambulance to the palliative care floor of the hospital, for pain management.

Mathew decided he had enough of the pain at some ungodly hour this morning and yes, he was up all night again in pain. The on-call nurse came in earlier today and changed the access of the pain pump. It is now in his lower belly and gives him freedom to move his arms a little more. The same nurse made the arrangements for tomorrow.

Fortunately there is a bed on the palliative floor because Mathew will have his own room and it will be much quieter there.

The ambulance is for safe transportation. Mathew is too weak to safely travel in our vehicle; after last week’s fiasco I would be very worried about him collapsing again.

The staff at the hospital can change Mathew’s medications much easier and have access to drugs not available for at home. By that I mean he can be introduced to a wider range of stronger drugs but needs close observation he can’t get at home. Once he is on a good dose then he can come home with that new medicine.

It is now time for me to go to bed. I dozed off and on over the last 24 hours but that is all.

Quick Update

The new dose of morphine isn’t working. Mathew didn’t sleep again last night. The nurse was already in and her and the Pallliative care team (including Dr. Wildish) are liaising with the Radiation Oncologist to discuss options.

Mathew is not able to lift himself up, from his legs, anymore. The tumours may be affecting the nerves and muscles too much. One of the doctors also said that Decadron also affects muscles. This means that Mathew needs both John and I to get to and from the bathroom and on and off the toilet itself.

We are waiting to hear what the doctor wants to do. More later.

ps – I received the employment services sick pay. *whew*

ps2 – we are in Southeastern New Brunswick so the worst of the incoming rain is not supposed to impact us the worst. It is more to the west. The rivers are flooding from the spring run off already so there are flood warnings issued. We live on a lake which rises during and after storms however our house is high enough to avoid a problem. Let’s see what “Murphy’s Law” says now that I made that statement…

The Hospital Bed is Set Up

Mathew’s bedroom is reconfigured to hold both his queen sized bed and the hospital bed. So far he just looks at the electric bed balefully and won’t try it. Eventually I know he will. The big bed is pushed against the wall with the window and the hospital bed sits beside it (think of how twin beds get set up with a drawer between them; same idea). We moved his tv stand out and put it in the garbage. It disappeared long before the garbage truck came by so someone got themselves a good deal!

The double dresser was moved back into Mathew’s room. It was in our room for months, to make room for the mattress/cot we put into the bedroom to watch over Mathew. John took our Living Room tv and moved it into the bedroom and hooked everything up on the opposite wall. The bigger tv is in there so Mathew can see it without sitting close in his chair. Remember he is supposed to wear glasses although, aside from Disney World, he hasn’t for years.

Mathew was quite uptight by all the hustle and bustle in preparing for the hospital bed and then setting everything up. We already had single bed sheets because Kristen had her single bed until a few months ago.

The recliner fits in the corner of the room between the hospital bed and the closet. It faces the tv so whoever sits there can watch it too.

Dr. Wildish dropped in for a visit again because Mathew’s leg pain is still not well controlled. Mathew fell asleep last night, exhausted, and did manage to sleep until 7 am. He is feeling better and much more chatty but refused to leave his bed because of his legs. Dr. Wildish was loathe to increase the morphine again after yesterday’s significant hike. She came by to see how alert Mathew was and to talk to him about his pain. Afterwards she decided to increase his morphine by a little bit more. We are waiting for the nurse to come with her magical key that opens the machine to increase the dose.

If that doesn’t work then she is considering switching to Dilaudid. Dr. Wildish is also going to talk to the Radiation Oncologist again, to see if Mathew can receive radiation in one “big” dose and what the chances of success are.

Prior to moving the dresser-drawers back to Mathew’s room they were cleaned and sorted. I set items into one of three bags; 1 for garbage, 1 for storage/give away and 1 for keeping. I had to hold each item and decide if it fits Mathew or if it is something he wants to keep. In essence it was housecleaning his effects before he dies. It was horrible. It was a sudden whammy of grief knowing he will never see these things again and won’t be well enough to care about them.

Today was a hard day.

 

 

 

 

 

 

 

 

 

Pain Pump and Hospital Bed

The pain pump was set up yesterday. It wasn’t a good day at all. Mathew realized it meant another step towards the end of his life and became upset. That along with the Decadron made for some trying times. I had to speak to him about his language when the nurses were here. He dissolved into tears saying he was so scared and I told him that was ok but the language was not.

The needle was inserted in the backside of Mathew’s left arm, where it shouldn’t be bumped and used as much as his predominant arm/hand, the right one. John had picked up the cassette with the morphine so the nurses inserted it into the little, portable iv machine. It is a small, heavy machine that is in a fanny pack. Mathew won’t wear it so John or I handle it when Mathew moves around.

The initial dose is halved as medicine absorbs through the interstitial area under the skin differently than by oral pills. It was not nearly enough and Mathew spent another sleepless night in agony. We were given the 24 hour number to call but didn’t. I slept through the night as John took over Mathew’s room.

I called the doctor and Extramural first thing when I got up. The nurse stopped in around 15 minutes later and shortly thereafter talked to the doctor and changed the dose on the machine. The nurse has a key to access the machine and without it there is no overriding the system. So yes, there are security precautions. Tracy first collected the data from the 19 hours Mathew was hooked up, confirmed the needle was still in his skin and the machine was working fine. Then she reported that to the doctor and the change was made.

The continuous morphine went from 3.75 to 5.5 mg. The breakthrough was raised from 7 to 10 mg/dose. The relief came quickly. While he is not completely pain free it is so much better than last night! He is on another 36 hour stretch here and will probably fall asleep early this evening.

Mathew’s decline in mobility is enough that we hurried the hospital bed along. I didn’t know that the OT was arranging for a bed to be bought for Mathew; hence the long waiting period. We called her today and spoke about a loan as that is all that is needed. The bed will be delivered tomorrow. It will be so much easier for Mathew to get in and out of bed and sit up. It is painful to watch him move about right now.

John will rearrange Mathew’s room and move one of our bigger TV’s in there so it can be watched from bed. He is wonderful about doing that for Mathew. He used to bring a small tv and one or two gaming systems to the hospital for Mathew, where he set them up for use. It helped those inpatient stays go by much better.

This is one of the transitions that is difficult for us. It brings us closer to the end and is a clear reminder that the cancer progressed enough to require these changes. Mathew so wants to stay at home and I am hoping we can carry out his wish.

ps. Service Canada called me today and said the issues with my file should be cleared up and I should see some money by Friday. My fingers are crossed!

 

 

 

 

 

 

 

Pain Pump

We  met with Dr. Wildish and reviewed the CT scan report. The only thing on the report that I either forgot or didn’t hear is a spot on Mathew’s right #8 rib. Otherwise let’s just say it is everywhere.

We are moving forward with a pain pump. It will take a day or two to get everything in place to set it up. There is only one pharmacy in the Saint John area who has someone trained to fill the cassette (plastic box) that will have the morphine in it. A needle will be inserted under Mathew’s skin ~ somewhere on his arm ~ and a butterfly thingamajig will cover it and have a connector piece on it. The pain pump will connect to the connector piece. The pump will be programmed by a nurse with the prescribed dose and schedule so it automatically dispenses when it is due. There is a button on it that is preprogrammed for break through morphine that Mathew can push as required. It will only send out a certain amount once each hour so there is no way he can overdose himself.

This gadget will be carried in a fanny pack as it is an automatic 24-hour-a-day pump. Sometimes very ill cancer patients don’t absorb oral medication very well and this injection method is far more efficient for the body to use the morphine.

Dr. Wildish is liaising with everyone who is involved with making this happen.

If it sounds like gibberish it is because Mathew and I pulled another all-nighter. He is still plodding along, in pain and grumpy as hell. That Decadron kicked into gear and gave him an appetite and the Energizer bunny stamina. It ain’t pretty people…. I am heading off to bed for some sleep as John took the day off.

First though I am trying to get through to Service Canada again because of a major clusterfook regarding my sick leave claim (for older folks; the employment insurance program). I was on compassionate leave for 6 months and then went online and followed the instructions to apply for the concurrent sick leave. Read: I FOLLOWED THE INSTRUCTIONS.

Everything has since turned to crap regarding receiving money from the government for the 16 weeks I am entitled to. I have called and spoken to 4 people already and also went in to personally visit the office in Saint John. It is one of those never-ending circles that make me want to tear my hair out. Apparently I was supposed to file a concurrent claim rather than a “new” one.

The people at the Service Canada office are front line workers and cannot access anything in the file other than to look at it and tick certain boxes. So I have to call the infamous 1-800-you-are-in-hell number. The one that gives you the royal run around without giving you an option to talk to someone. Somehow I did though and the last time I spoke to a representative, she went through the information and said the problem would be cleared up by April 25th and to check on my online file for an update.

I called her after I tried to file the second report and the Service Canada website flashed me an exclamation mark and “error you must call” message.

I figured good faith and all that, everything would be fixed. So I went on yesterday to file again and now it says I missed the last report in so the whole claim has to be reactivated. When I check in the file it says a decision is still pending. I call the wonderful 1-800-we-hate-you number to be told they are too busy to talk to me so try to get help on their website.

My eyes are flashing, my temper is boiling, and I don’t feel.nice.any.more.

I may have to call tomorrow.

Good thing I’m not a single parent relying on this money to live on. It rates right up there with my employer’s new pay system, the infamous Phoenix system. Service Canada had to set up some dummy account to get me money last fall because Phoenix can’t spit out paperwork in a timely manner. Given that so many people are either owed thousands of dollars or have to pay back thousands of dollars because of this new and “improved” pay system the government insisted on rolling out even though these critical errors and flaws were well documented before it completely rolled out….. I am SCREWED.

Rant over, sleep is needed.

John is taking care of our beloved grumpy bear and hopefully his pain will be much better managed within 24 hours or so.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Oh Sh*t!!!

Dr. Wildish called me on Friday with an update on those CT scans.

If you recall Dr. Wildish manages the Palliative Care Floor at the hospital and Dr. Hemmings looks after the Extramural (outpatient) side of patient care. They are switching places effective Monday, 1 May, so now Mathew falls under the care of Dr. Wildish. We met her last June when he transferred from active care to palliative care.

So… Dr. Wildish had a printed copy of Wednesday’s CT scans. That preliminary review we had? It was nothing. NOTHING compared to this. This report reflects the true tragedy that is Ewing’s Sarcoma. I told you before it is extremely aggressive and without anything to slow down or stop it…. well, I won’t see sizes until we receive our copy of the report on Monday morning.

Until then, this is now what we know: There are numerous cancer lesions in Mathew’s dura, with one particular tumour growing into his skull. There is cancer along his spine at the T11 and T12 and 3 new tumours in the soft area around the spinal cord at the L2 and L3. The L3 is where the original tumour is, if you recall. There is cancer in his right ilium and another at the top of his right femur. There is cancer on his breastbone (at the front where the ribs join) at on his right shoulder blade. There is cancer throughout his liver and in both kidneys and adrenal glands. There are new tumours in both lungs and the lining (pleura) of both lungs. The tumours that were already there have grown. His left lung has collapsed a little where that liquid is at the bottom of the left lobe. The lymph nodes throughout his abdomen have cancer in them.

As his arms and legs weren’t scanned there is no information on them but who the hell cares by now? Pretty sure there will be spots there too.

I asked the doctor is any of this new cancer was evident at all in that last scan done on December 22, 2016. The answer is no. This spread and grew in the last 4 months. That is the devastation of Ewing’s Sarcoma and I know of cases where it spread even faster – more like it exploded in just a few weeks.

Dr. Wildish is meeting with us on Monday morning to discuss these findings and to determine what happens next. That would be medication, radiation, etc. Radiation is already a no-go as far as Mathew is concerned.

I did tell Mathew his cancer spread. He knows that there is more in the lungs and what was there already grew. He knows he has a spot on his right leg, in his spine at the original location, and also in his right shoulder. He already knew this was probable based on his pain and it is so important to legitimize it for him. He told me he wants to sit in on Monday’s meeting. He has the right if he wants it; there is a lot of time between now and the appointment to reconsider. We shall see what happens.

In light of this report Mathew’s Nortryptyline (sp?) was already doubled and so was the Decadron. The morphine was put back up to 90 mg both morning and evening. None of that has impacted the pain in his legs. Our goal on Monday is to push for something that will relieve the pain. He has suffered enough.

Mathew is very unsteady on his feet right now, both due to general weakness and also side effects of the new doses of medication.

Speaking of him that is where I am heading back to right now.