Room With A View: Joey & leukemia Part 3

Part 2 here

August 2010

leukemia isn’t like a lot of cancers.  A victim technically goes into remission after five weeks of getting beaten with chemotherapy on an almost daily basis.  His particular leukemia,  acute lymphoblastic leukemia (ALL),  has an excellent prognosis, but all leukemias have a high risk of coming back.  For this reason, the treatment is long, and arduous and continues for another two years.

The evening of 8/24, we get our sheets and pull out the couch bed to get settled in for the next 4-5 weeks…

8/25 – Day 1: The Room with a View

So we are stuck in a large hospital room.  It was one of the larger rooms on the 5th floor.  At night, you could see the lights of Yankee Stadium!  And then you turn around and see your little boy in a hospital bed with things coming out of him.  No games for us –  we are in quarantine.  Joe wasn’t allowed to leave the room.

They are unique positive pressure rooms that prevent air from the outside coming into the room, but the air can go out.  Apparently, only good clean air is filtered in from somewhere.  Cool – right?  I suppose having your child in one of these rooms should make you feel better, but it didn’t.  It is one of those instances where you stare at them while they are telling you this tidbit of information.  You look at them blankly, and your head is screaming “I DON’T GIVE A SHIT”  but you have to find the sane part of you that says out loud, “Gee, that’s great.”

If you know me, then you know that being contained is a nightmare.   I am slightly claustrophobic and need to be moving at all times. You get over that real fast when you have to.  Freddy was taking his vacation by sleeping at the hospital, but he also had to take care of Bella.  I would not leave that room. There was no way I would trust anyone to talk to a doctor or take a note.  I have to be in control and doubt any Moms would be any different.  I am the way I am, because of my Mother.  She taught me well!

Back to the Treatment

First thing in the morning, Dr. Levine came to visit and told us that Joey qualified for a Dana Farber study.   The protocol used in this study was to decrease the side effects of chemotherapy.  She gave me 16 pages of the drugs, descriptions and side effects of each one with every phase over the course of the next two years.  He fit the criteria, and as long as we agreed, he would be in the study.

Who wouldn’t want to be in that study? Side effects can be the worst part of any drugs, not just chemotherapy.  The study seemed so promising at first, and maybe it was?  You don’t actually know.  There was no time to think because the treatment was to start imminently … like in an hour, so I had to choose.  I guess I just clung to “least amount of side effects” and went with it.  I read and initialed 16 pages, just like you do when you buy a house. And what did I buy?  Five weeks in a room with a view of watching my son slowly lose his hair and his ability to walk.

Right away we started with the steroids and at 3 pm, his first chemo spinal treatment.  With the spinal therapy, came morphine and guess what?  Joey had a severe reaction to what we were pretty sure was the morphine.  He had the rigors, which is uncontrollable shaking with vomiting.  It’s only just beginning.  We didn’t waste any time getting into the shit storm.

It is heartwrenching to watch this happening to your child.  As a person who likes to be in control, I had to learn to relinquish it quickly.  I had no control over this! At the same time, I am kicking myself because I realize I already screwed up.  My mother and I have issues with morphine, and I didn’t mention that.  UGH – I learned a lesson there.

You have to mention everything you can think of big or small!  Let the doctor decide what is important and what isn’t!   And no more morphine for Joey. That would be repeated endlessly for two more years and the rest of my life with all my kids.

By 8 pm, he had a low-grade fever, and by 9, it was 101.8.  He then proceeded to throw up two more times.  Could still be from the morphine, but at this point, we figure it is the meds in the spinal.   Tylenol for the fever and Zofran for nausea.  Vitals at 12 am, and 4 am, and then blood draw at 6 am.  The door to this room never stops opening all night, but I am ok with that because I need the reassurance.

8/26 & 8/27 – Day 2 & 3

The prednisone/steroids continue as they will for the next 32 days.  32 days of steroids.  They start high and then level off.  Yup – we got most of those side effects.  But if you have ever had a child or anyone close to you take steroids, they are horrible.  I had never taken them, so I could not understand what he was feeling.   He quivered constantly and visibly; I could see he had no control over what he was feeling.  He had his moments of fright, and I would try to just hold him with the hope of making it stop.  Otherwise, he took it like a trooper.  I couldn’t stand watching the uncomfortableness, and it never got any easier.  Steroids suck.

With those steroids, came hunger.  The doctor said to carb him up.  Give him all the pizza and bagels he wants because he is going to lose weight.   Pizza and bagels thrilled him!  Those were the things that I was always trying to limit.  Kids with DS love the carbs and tend to be a little bulkier.   Bulky doesn’t help the low muscle tone, but who gave a shit?  Not me … I even let him have McDonald’s once!  But only once, because that shit will kill you, never mind the cancer.

While still recovering from the spinal, he had to get blood because his hemoglobin was too low, and his heart rate dropped down to 60.   We also have to continuously check the electrolytes from the vomiting and potassium because it can cause kidney damage.

On the bright side of all this, the visiting began.  Joe got a laptop from his friends and somebody brought us funny glasses.  We thought it would be great to take everyone’s pics with the glasses. So we did!   We got some much-needed smiles going on in this room!

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He just loved any and all visitors, no matter how he was feeling.

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8/28 & 8/29 – Day 4 & 5

The steroids have now built up, and the real shit drugs begin.  With the steroids, were four more massive doses of different kinds of chemotherapy drugs.  Some were oral, some in the vein.  We already had the spinal for this week.  Deep breaths.   His blood pressure was still in the low 60’s with fluctuations in the 50s.  He had an EKG, and already he needs a platelet infusion.  Did I mention he had diarrhea?

It is only day four.  I will tell you that there was no time for thinking with this mess.  You just do and pray you don’t panic.  One day at a time fits so many situations, and this was one of them.  On top of all the chemo meds, was all the anti-nausea, bacteria and reflux drugs.  I couldn’t stand this crap; I barely take Advil.

They would ask me if I needed anything for my nerves, but I wouldn’t do it.  My half a Xanax at night was enough – I needed to be alert during the day.  They tried to get me to some therapy groups too, but who has time for that?   I was not leaving that room.

In the meanwhile, we are having trouble with his pic line.  It is bleeding a little and bothering him.  Joe’s sensory issues were kicking in.  He wants this tube out, and the surgeon who put it in has to come and fix it.  If it doesn’t get better, we will discuss another option.

8/30/2010 or Day 6:  Party in the Room!

Heart rate is low, blood pressure is high.  Maybe we need an EKG?  They gave him heart meds and it dropped temporarily.  At this point, as I am on heart medication myself, I am starting to do nothing but watch the heart monitors obsessively.  And obsessed is what I was for a bunch of hours, and then I got a distraction.

It was also my birthday, and to my surprise, about a dozen of my beautiful friends showed up at the hospital.  They brought dinner from my favorite Indian restaurant, cake, and drinks.  Yes, there was some wine!  I am pretty sure that wasn’t allowed, but the rooms are soundproof so we weren’t a disturbance and Joe was thrilled to pieces.

This kid LOVES to celebrate a birthday – especially with a party!  Joe was so happy; the nurses let the celebration continue for a couple of hours.  I couldn’t have been more grateful to have such an amazing group of friends by my side.  Smiles, love, and laughter are the best medicine.  That show of love gave me strength for what was to come.  I am a blessed lady!

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The kids all came to visit. Artie came up from Florida and at this time was when I discovered that he had tanked my credit and was no longer sober and drug-free. What else can somebody possibly handle you ask? Whatever is thrown at you!  Oh, I was beyond stressed, but I wasn’t going to lose it.

8/31 – Day 7: Same Room, Different View

People have to start staying away now and the few visitors he could have, had to wear a mask. Joe’s numbers have dropped considerably, he is lethargic, and his heart rate is becoming a concern.  The high blood pressure means his heart is overworking and the kidneys need to be checked.

We also discuss peripheral neuropathy.  A very real agonizing problem with side effects of chemo.  There happens to be a study going on with glutamine and it decreasing the issue of peripheral neuropathy and mouth sores.  The study was for adults, but we had the privilege of getting in on that with a children’s dose.  Glutamine is all-natural and could not hurt, so there was no downside.

He was getting heart meds, wearing a monitor and got another EKG.   The monitor and EKG don’t show anything, but I am not satisfied with that.  I need an answer!

Joe got his last chemo shot before a three-day reprieve. This was when he would really start to crash and was given a few days to recover. That particular chemo has a decent risk of an allergic reaction.  The risk is very low of it being a severe reaction (anaphylaxis and lip/throat swelling).  We are good on this one … for now (hint hint). 

The steroids?  They just keep on coming.  Withdrawal will be an issue at the end of the month.   He isn’t getting out of bed as much anymore, and this is now his room view.

A wall of love that eventually would get filled up!  But we are only in week 1.

First Few Days of September

Let the crashing and the hair loss begin.  Me –  I still haven’t left the room.  Freddy has to go back to work.  Thank God for my Mom and family,  as things are going to get worse …

Click here for Part 4

September is Blood Cancer Awareness Month. Last year, my friends and I raised close to $700 for the lymphoma and leukemia society. This year I have added a new line at my store – all products from Cover Me With Love have 25% going back to The Lymphoma and Leukemia Society.

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Please remember to keep my friend, Teri,  in your prayers,   We are big believers, and leukemia is kicking her butt – if we all work together, we can turn the tables and kick leukemia’s ass. *My friend passed away about a week after this blog was originally written, but I don’t have it in my heart to erase in the update. I have to keep it here forever as a reminder.*

Much Love Always,

Sandy

#BeKind #cancersucks #enlighten #empower #inspire #educate