Lovingheart

He did ok today.  Definitely second half of the day is better for him.  Having to get up and be somewhere when he isn't feeling well starts the day off poorly. Appointment this morning at 815 for his first TBI.  Pretty smooth and then on to hospital to get topped up with liquids and  more anti nausea medication.  While he was there, I checked us out of the hotel and into RMH.  A big facility that is amazingly well organized.  The frustrating issue is that Marlon can't be left alone in the building.  He is only in it today but in a month's time will be for about a month.  Under normal circumstances, he tells me what he is willing to eat, and I go get it.  I go for walks and he gets time away from me.   No sense in worrying about it now. Have I said how much I am spending on food!?  His appetite is quite poor so I am often buying things that he thinks he may be able to eat.  I am wasting a lot more food than I care to w...

A nice sleep in the hotel room.  Appointment for first TBI (total body irradiation) was at 820.  Good thing we were close by. Straight to room 15.  Over an hour by the time he was marked up, properly positioned, and zapped.  He lies on his back with head to the side and almost one third of his body is done at a time, top (including head again), middle, lower and then a little patch for his feet.  He flips over onto his front, and same thing again. Walking across the street to sick kids afterwards, Marlon said it's a different level of feeling sick all over.  He felt bad but was ok.  To the hospital where they pumped liquids (saline water) into him to make sure he stays well hydrated.   By the middle of it, the radiation caught up with him (or was it the large quantity of liquids), and he felt really bad.  Nauseous, uncomfortable, and sick. While there though, we did get news that we now have a spot at the RMH.  Somewhere to sleep to...

When Marlon woke up this morning, he was a little queasy with no appetite.  When we got to the hospital we bought him a smoothie and that did help.  Dressing change, blood work, and they also gave him a stronger anti-nausea drug, partially in preparation for tomorrow. I had asked about why they chose an unrelated 100% donor instead of a 50% related one (the question kept ruminating in my mind).  He did say several factors go into the decision.  We did hear Marlon's donor is a 20 year old male with the same blood type.  If they go with a 50% match only, there can be more issues and it requires more chemotherapy.  Hearing more chemotherapy and more suffering was enough to put my mind at ease. We ended up sitting around waiting for test results which never came.  So we went across for Marlon's final cranial radiation. Afterwards he was given his mask as a souvenir.  One of Marlon's friend's family gifted us a stay at a local hotel for two nights....

A busy day Sunday with a lot of running around, preparation for being away, and trying to give the dogs extra attention and exercise.  Also very emotional.  In a big way, because of the dogs. Their reactivity is exhausting and frustrating.  Always something. Before cancer, Marlon was looking into ancestry DNA testing.  He was recently gifted a set.  He tried to do it last week but upon signing up he saw he was too young.  He gave up.  A friend pointed out that a parent had to set up the account and then he can do it.  Just mailed it off today.  After a bone marrow transplant, ancestry testing doesn't work properly, and he wouldn't have been able to (they suggest testing a sibling). With the anxiety about radiation and transplant upon me, I reached out to the mom who was her son's 50% donor.  She said there were 4 unrelated 100% matches out there for him but she chose to be the donor.  She said a 50% related is as good as 100% unrela...

Luckily, Marlon felt back to normal today.  No headache or anything.  Fifteen years ago, when Marlon was three months old, we bought a new car (actually my mom helped us immensely).  This car has been limping along for years.  Fixed in so many ways, it is colourful, with a black hood, grey, black, and red door handles.  We kept thinking it won't make it on the next drive.  It was a guessing game as to how it would die.  Luckily we were not on the road but I was about to drive off when I noticed it wasn't moving well.  Rear tire seized (brakes).  After way too long, and a lot of banging and lube, P got it unstuck.  Saying goodbye to an old friend, even the four wheel kind is sad. Before we had the car, Marlon received the gift of a sleeper saying “I love my blue car”.

Another emotional day.  Time in traffic wasn't as bad as it has been.   Once it was his turn we went into the radiation room where his decorated mask was waiting.  He told them what he wanted on his mask.  Avatar.  He lies down and they snap the mask in place.  His head is immobilized.  That was hard to see.  They made a few adjustments and I had moments of panic thinking the mask wasn't right.  Don't want them zapping the wrong part.  The pediatric nurse said all was well. Nice having her there.  We went into another room and watched on the screen.  Marlon couldn't move except for his eyes and they were constantly on the go.  It was quick, in and out in less than twenty minutes.  Afterwards, he had a weird taste in his mouth.  Chlorine as if he had swallowed a lot of pool water.  Then the headache, not major, just there.  And an overall feeling of being unwell. I heard the first one wouldn't affec...

I was really looking forward to the idea of a quick in and out to Toronto by taking the train.  Then it was pointed out to me that is not a smart idea as such enclosed spaces can be cesspools of germs. So right.  So we will hang out in traffic tomorrow.  Marlon had time with a friend today.  Possibly the last social thing for a while. It is only in the last two years that I have allergies.  Today was a rough one and I was sneezing and blowing my nose constantly.  I know it's not a cold, which is a good thing.  Add to that I was falling into overwhelm and despair, something that isn't new to me.  Not the best of days.  But we all have down days.  He has been wanting a new cap for a while but had a specific colour in mind.  He found it.

Tuesday was a busy day.  I felt like I was driving from one thing to the next  A walk with a friend and dogs them home to take Marlon to Guelph.  There he met up with friends, they hung out for a little before the fire organized by the Guelph outdoor school for him.  A lot of driving and back and forth during the day.   This morning was an early day to get to Toronto.  We dropped off the dogs at the doggy daycare for them to experience for the day.  On the way to the hospital we discussed possibly taking the train in on Friday.  They drew blood for testing, changed his dressing and he had the nose swab (NPS).  It is important for him to stay healthy enough to start the transplant process.  No colds or sicknesses. We met with the doctor, another nurse practitioner, a pharmacist, and the social worker.  Again so many people.  Again talking about all the medications and what the next two weeks will look like.  One thing ...

I thought I had the dog issue sorted out.  Friday it was pointed out to me I didn't.  I had to make changes.  It was a stressful time, wondering how to manage it.  Because Mina is reactive I wasn't sure she could hang out with other dogs.  A lot of messages back and forth, pleas for help, and worrying.  Finally today we met with a dog boarding place and they helped the dogs to hang out in the field with others.  They didn't love it but adjusted.  When we go to the hospital on Wednesday, I will bring the dogs to this place for the day.  Assuming all goes well they will stay there for two weeks. Linsy went back home today.  It was nice to spend time with her.  Pan will miss her.  Both dogs enjoyed hanging out with Linsy and her friend. Here she is holding up a monster beet.

The clock is ticking.  So much to think about, prepare, and do in a week.  Marlon felt rough several days recovering from the LP and bone marrow he had Tuesday.  Luckily by the weekend he felt better in time for his sister to come for a visit.  We had a nice full weekend.  It has taken him a while to consider using his right arm, the one with the PICC line attached.  We played some Frisbee, spike ball, and throwing balls for the dogs.  His arm got a good workout.  We all did.  Once in the hospital, Marlon will be in strict isolation.  Only his brother or myself will be allowed to be with him.  He has been making plans with friends.  Do what he can while he feels like it.  A game of spike ball at dusk

First time around, Marlon wanted nothing to do with his pills.  He wouldn't touch them and each one had to be covered with ice cream.  He even chose to get the feeding tube near the beginning of treatment ( https://www.lovingheart.ca/2020/10/october-1-2020.html?m=1 ). partially in the hopes that pills could be liquified and go through the tube.  He was disappointed when it turned out he still had to take pills. This time around, pills weren't such a big deal.  He could handle taking pills as long as I gave them to him.  Last week though, he just started taking his own pills, no ice cream needed. At sick kids the other day, when they mentioned how sick he will be feeling, they suggested he may want to consider a feeding tube to at least get some food going into his stomach and through the intestines.  Marlon gave that a hard no.  He will not have a feeding tube again. My niece lives in Toronto and is happy to let us stay in her and her partner's house ...

Radiation starts on the 25th.  Three days brain (Friday, Monday, Tuesday) and then three days TBI.  They kept calling it TBI which is ‘total body irradiation’ but I kept thinking "annihilation” (yes that would be TBA but we could say “innihilation”) whereas Marlon was thinking “incineration”.  No matter what the “I” stands for, it will be rough. TBI is twice daily, morning and afternoon. This will be done as outpatient with Marlon being admitted on the 1st (third day) as long as he isn't too sick before that. We are on the waitlist for the Ronald McDonald House as of the 24th.  No guarantees when one will get in.  It is a busy place and filled to capacity.   I am assuming that, by Tuesday the 29th, we will be staying in Toronto, and be there for three months.  If there is no space at RMH we may be couch-surfing until the 1st when Marlon becomes an inpatient. Early morning with the mist in the field.  

Today was a full day.  Intense.  We left at 8 to hang out in traffic to get to sick kids.  Several times on the way there Marlon commented that he was not liking it.  He is a country boy and there is so much traffic, a concrete jungle and then up to the eighth floor.  I knew it would be a lot.  New people, new environment, all foreign.  Luckily those from the team that we met were wonderful, supportive, sense of humour, patient, and yes sharing intense information. I hear all that can go wrong and I worry for his suffering.  He thinks I worry too much about the side effects whereas I am not sure he is accepting how intense it really is. To have them talking, telling us of the likelihood of him feeling bad with the radiation, the chemo, and then the drugs to take away immunity and removing his body's ability to make its own blood. Alternating between overwhelming emotion and then just accepting it as the path that is ahead.  There is every rea...

Marlon was disconnected today and then sedated for lumbar puncture (LP - three different chemo drugs into his spinal fluid) and the bone marrow.  They take a sample to send off for testing.  We imagine it will be as clear as the last draw. Hard to believe it has only been three months since Marlon was diagnosed again.  Seems like it has been so much longer.  He had a walk when we got home this afternoon but soon realized his back was quite sore and he was wiped out from the day. A year ago we were at the cottage.  Linsy and Pan paddling together.  He was so small then.  No swimming for Marlon this summer.

Tuesday morning will be back to the hospital for the day.  This will be the final visit to McMaster for a while. Marlon will be disconnected from his blina bag.  This four week stretch wasn't as bad.  The bag is lighter and less obtrusive.  Still, he will appreciate the freedom. I was marveling last night at how slow I can be sometimes.  We were struggling to plug in the pump.  The plug is squished against the bed, an old outlet, and the cord keeps slipping out.  This has been a common struggle over the previous eight weeks.  Last night I had the bright idea to get an extension cord.  Duh!  Now why didn't I do that sooner?! Not the most recent full moon but from this day three years ago.  When I am with Marlon for his inpatient hospital stays I  rarely go outside at night and am less aware of the phases of the moon.  The next phase of his treatment is approaching…

Thursday and Friday felt a little hectic with emails and the timing of the next few weeks being spelled out more clearly.  Something that has been hanging over our heads is taking shape. And then we fall into another “normal” weekend.  Marlon spending most of it with a friend and enjoying feeling fine. We have talked about doing something special before radiation begins but no specific ideas on what that might be.  So if nothing else hopefully he'll get time with friends. I have seen a snake a few times in the last week.  Hoping it stays safe from the dogs.

We had our video call with the radiation team at sick kids.  Next week he will be “fitted” for it.  Placed in the machine and getting a mask made for the brain radiation.   After the call, Marlon felt they didn't have too much negative to say about side effects so he thinks they might not be that bad.  The focus of the call was not about how he will be feeling but they did say that it is a low dose radiation.  There is a small chance of more serious side effects but didn't touch on the less serious ones.  In a small percentage of cases (I believe I heard 2%) there can be cataracts, another cancer that develops from the radiation, or issues with the brain. As the doctor pointed out the other day, the cancer has relapsed so the overall treatment is more aggressive. The sun was going down but the light was reflected in the cloud which was framed by the trees.

While at the hospital yesterday, I asked the doctor about radiation and how it would affect the brain, memory, and intelligence. The hope is that any side effects will be short term but it is possible that memory and brain function will be affected.  Higher dose radiation as in cases with brain cancer and tumours have worse side effects.  His dose will be on the smaller side. While Marlon’s primary oncologist is a good doctor, she does often talk in worst case scenarios so I guess like all of this we just have to hope for the best. When she was talking, I was talking it in, feeling nervous, and paying attention to Marlon and his reactions.  Afterwards he said he was watching me for my response. In the end, neither of us was thrilled but we want to know.  There are a lot of crows around here, some with very distinct caws.  I did a double take when I saw them on the the railing on the top of the building.

Today was a base line testing day.  I think of sports where they often recommend a brain base line test for each individual that you can review in case of a trauma to the head. There are several potential side effects from the bone marrow transplant. They want to be aware of the starting point. First off was the Full Pulmonary Function Test (FPT).  The one entailed sitting in a booth, breathing into a tube, testing lung function.  Different breaths, different resistance.  Marlon struggled with this as the person administering the tests was a little abrupt.  He reacted and she called him out on his attitude.  My sense of it was someone who has been doing their job for a while, had the same explanations and same motivators.  And we were told off for being late.  We were running a little behind but after spending 15 minutes looking for a parking spot in the garage that didn't help. Then onto clinic for dressing change and his final bag of blina. The ...

Marlon has been part of a D&D group that has gathered on Saturdays for a couple of years.  After he became sick back in April the others didn't end up meeting very many times - different priorities for some of them.  He was looking forward to going again today and was waiting for the bus to take him to Guelph when he heard it was cancelled yet again.  Maybe in the new year he and some school friends can create a group.  They did have one going at the school and maybe that will start up again. When I mentioned D&D to someone a while ago they said Dine & Dash.  Glad to say it is something more honest, dungeons and dragons. Wispy clouds in the night sky  

Hospital visit was on Tuesday.  Different going onto the ward.  The clinic has many patients going through each day.  Cancer outpatients that are getting their chemo, dressing changes, blood work, or related things done.  A different pace for the nurses on the ward compared to the nurses in the clinic.  The clinic nurses know that Marlon likes his dressing changes to be done quickly.  They are used to the pace and keep up.  On the ward, even the dressing changes become more of an ordeal and there are often two nurses together to help out.  Either way, great nurses all around.  Marlon’s least favourite nurse is “too nice”.  He finds that irritating. He did notice on Thursday that one of the PICC lines had blood in it.  It probably hasn't been properly flushed.  I did email the nurse that we keep in touch with and it isn't a big deal.  I was glad to hear it.  The fresh dressing and the two lines.  The bottom one is...

Before leaving for the hospital this morning, I noticed the daylilies around here open with their varied shades of orange.  On the way to and from Hamilton, we saw several daylilies.  It's their time.  We are lucky that Marlon's primary hospital is McMaster.  A more pleasant drive than the one to sick kids.  Even though it's a holiday his dressing still needs to be changed and the blina bag replaced.  The oncology clinic was closed but we were scheduled to show up on the ward.  See some of the regular people that work there.  All is well.  Afterwards, I dragged Marlon along for more strawberry picking.  What a disappointment compared to the last time.  The berries were sour tasting and either not ripe or mushy.  Their prime season is such a short one.  The fireworks are happening and Pan is oblivious while Mina is panicking.