The Adoration of the Christ Child

The Adoration of the Christ Child
See if you can spot why I like this image

Everything in its Right Place

A blog about disability, life, parenting, and learning what it means to live well in this world.

Wednesday, February 22, 2012

Lent 2012

Today is Ash Wednesday, the beginning of Lent. Today is also the day before we head back to the hospital for Adam to have his new port put in.

It has been a very nice, relaxing two weeks since we were last in the hospital as patients. Though this will hopefully only be a day trip (Adam is on the afternoon list, so depending on the time he goes in and the time he is ready to go home we may have to spend the night, but we are hoping to avoid that) it has been such a complete break from all things medical that I find it a shock to be packing the bag again, to be making contingency plans again, to be preparing for surgery again.

The irony is not lost on me that the Lenten time is a period of penitence, of remembering our Lord's suffering and of being mindful of that which takes hold of our hearts on earth. I began the usual process of thinking about what to give up, and then realised that just the act of getting in the car tomorrow at 10:45am will be my Lenten observation. I don't want to go back, I don't want to send Adam back into theatre, I don't want to give up another whole day of my life. MY life. I like things the way they are, I like normal and I like boring.

One of the most common phrases we will hear over the next six weeks has to do with denying yourself and taking up your cross to follow God. Last year Lent began with Agnes' arrival, and the denial of self--and particularly sleep!--that accompanies the first six weeks of a new baby's life brought the meaning of Lent to my heart in a deeper way. Now this year Lent is beginning with another, different celebration of life: joy that Adam has finished the first part of his treatment, gratefulness that he has done so well so far, and steadfast, resolute and dogged willpower to begin the next two years of our life's journey.

I am no saint--I really want to be done with all of this!! But I am humbled and blessed to walk alongside Adam who perseveres without complaint, and the doctors who continue to support and treat my son, and our many friends who carry on with us gladly.

Happy Lent, if that's not too paradoxical a thing to say.

Friday, February 10, 2012


10 February 2012: Day 238--Finished with intensive

Today we are celebrating, and with good cause: Adam finished the intensive part of his treatment when the last dose of chemo was given at 3:30pm this afternoon. I wasn't sure it would happen after the suspense of the week and yesterday's drama, but it did. The only slight catch was that the doctor had to give the chemo as Adam only has a peripheral IV line just now, and there is a danger to his tissue if the line breaks and the chemo spills into his arm, but it all went very well and we were out by 4pm.

We started the party at Casa di Gelato on King street, with two of their famous ice cream sundaes--here are the boys ready to tuck in:

Mom and sister helped of course!!

Not much partying tonight as Adam has to spend one more night in hospital to finish up his IV antibiotics. He's out tomorrow morning though, and no looking back!

The top line of this post refers to my journal entry for today. It has been eight months--238 days--since Adam's diagnosis on June 18, 2011. This is not the end--he will start maintenance soon and that lasts for at least 18 months. He will need another port. He will be in hospital again someday soon enough. But it is both an end to the intensive, frightening, always changing part of treatment and a beginning of reclaiming some whisper of a normal life amidst the howling winds of the "long term illness". For now, we are content.

Well done Adam, you are a champion and a testimony to the power of living in the present and soldiering on to the end with your head held high and your cloud of witnesses surrounding you.

Thursday, February 9, 2012

Decision made!

It's 2am and Adam is sleeping beautifully, I not so much, but that's life for the adult accompaniment to the hospital night shift.

The nurse comes in to give Adam's antibiotic through his port and halfway through it becomes apparent that something is wrong: the fluid is not going into the blood stream like it is supposed to, it is going into the surrounding tissues. Suddenly Adam is jumping all over the bed and we know we have to take the needle out and alert the doctors. Luckily we got to go back to sleep (Adam did) and wait until 8am for our main doctor.

He checked out the port site and said it looked better, try putting a needle in. This time though, it seemed to hurt Adam even though the fluid was going in better. Called the doctor back and without a moment's hesitation he said "Take it out!" The nurse brought the "Nil by mouth" sign (i.e. no eating) just in time to whisk Adam's breakfast out from under our noses. Quick logistical negotiations: a nurse will stay with Adam while I rush back to collect the baby from Daddy who has to rush to teach a class at 9am. This in rush hour traffic in the rain--luckily we live close to the hospital!

Adam finally went in for his op at 12 noon, the same time the baby went to sleep for her nap. I got a moment to eat breakfast/lunch and read the paper before the circus started again. Adam's op was successful--they removed the port and put an IV cannula in his right hand. We are to hold on to this cannula for two days if possible--Adam needs one more dose of chemo tomorrow and two days of IV antibiotics. If the cannula comes out after the chemo, well so be it and that's us done. Even if it stays in we are free to go by Saturday. That's a sweet deal--and even better to know that the one thing causing all the trouble with infection is now out of his body, even though that's also the one thing we need most to continue with his treatment. We'll cross those other bridges later, i.e. do we put another port in or continue with IV access for each monthly chemo treatment? For now, we get through tomorrow and be ever so thankful we have made it to the end of the intensive part of Adam's treatment protocol.

I might add it's pretty hard to not think about "accidentally" dislodging the cannula tomorrow afternoon and oops, I guess we have to go home now! :)

Daddy arrives at 4:30pm and I walk home with a tired baby, who again mercifully sleeps in the buggy while walking. I collect Caleb from the school friend who took him home with her and her three children. We walk home in the rain, each taking turns to console a crying baby who just wants out and fed. We arrive home to house key is on the key ring in Daddy's pocket at the hospital!! Sigh...not the first time today I've thought "Thank GOD for mobile phones!!" :) Daddy to the rescue...dinnerbathandbed in quick succession. A quiet house at 9pm.

This is one for the record books, and, strangely enough, a good day all around.

Tuesday, February 7, 2012

Decisions, decisions

So...seems I need to stop making predictions about things because I haven't been right about anything yet this week!

It's not a tummy bug, and Adam is not going home any time soon. In the complete sense of being discharged that is; the current plan is that he goes in for the night so that he can have antibiotics via his IV line at 8pm, 2am and 8am, and then comes back in during the day for another dose at 2pm. In between he can go to school, and we can go about our afternoon as normal. Except for the new threat hanging over us which is that this bug may not clear out with only one week of antibiotics.

The doctors are now concerned that the bug is still growing, despite more than 4 days of IV antibiotics, and we might need to switch to a different one for a further week. This same antibiotic can also be given orally, but it's efficacy against an infection in the blood, and more specifically in Adam's port, might not be the same as giving it directly into the blood.

Our doctor has left the decision to us: Seven further nights in hospital and seven further days of IV antibiotics in the hopes of completely eradicating this bug--which may or may not happen no matter what, in which case the port comes out and another has to be put in, OR we switch to oral antibiotics this Friday, go home, and hope for the best. If the bug comes back we still have to change the port, and then we will wonder if we made the right or wrong decision. AND, if the bug comes back after that much antibiotics, will it then be resistant, in which case I don't know what they are going to be able to do??!

So we have decided to see what the blood cultures are on Friday and go from there...if negative, i.e. the bug is gone, we will opt to take him home and go the oral route, ensuring that he is able to sleep well at nights (something he and we can't do at the hospital) and hope for the best. If it is not gone, we will stay the extra week and keep praying that this next one will do the trick. This is a notoriously "sticky" bug and Adam is now properly neutropenic so every move counts.

Will keep you all updated on his progress and our decisions.

On a lighter note, last night a friend of ours was across the way at the hospital which made for a pleasant evening of chatting. During our chat, Adam left his Tumble, came into her room and started opening her drawers--he took out her bra and tried it on, then put on her Ugg boots and headed down to the lift in them, slapping along the corridor in his too-short pajama bottoms and too-big boots, hilarious!! The boy really does know how to make us smile!

Sunday, February 5, 2012

Update: this is NOT a tummy bug!

After my post on Friday evening I had a fitful night's sleep and arrived at the hospital on Saturday morning to find a smiling and happy Adam and relatively calm Daddy in the room. Turns out Adam had slept the better part of 5pm to 9am the next morning and obviously felt better for it!

The nurse told me that they had him on an IV antibiotic, and I asked if this was because his neutrophils were low (the original plan was to put him on IV antibiotics if his neutrophils were low as they would have to protect him where his own body can't). No, she said, it's because of the bug that grew in the blood cultures. So fast? I asked. Yes, turns out that the more of a bug you have in your blood, the faster it will grow. Where normal blood cultures take two or more days to come back, Adam's took a few hours. That means that there is a lot of this bug in his blood, so they had to take quick action.

Not only that, but the type of bug is also a consideration. Turns out Adam has what is called Stenotrophomonas maltophilia. Go here if you want to read about it. It's not usually found in humans--great. However, it's not usually virulent, which is great too. It's susceptible to a simple oral antibiotic that Adam is already on two days a week (as prophylaxis), but to be extra safe they wanted to keep him on IV antibiotics for the weekend. And he had a blood transfusion today to boost his low blood counts, so when we do get him home he'll be better than ever.

So by Saturday noon Adam was much better, happy and pretty much back to normal. And because of that Brian and I went ahead and headed off to Edinburgh for the Black Keys concert we had planned to go to months ago. Only we had to very quickly set up a network of people to watch Adam at the hospital for us, in addition to the couple of friends who stayed at home with Caleb and Agnes! All went very well and we completely enjoyed the break. After the chaos of the week five hours on the train to talk and read, four hours enjoying a blisteringly good music show and nine whole hours of sleep was bliss. Bliss.

Again, pics to follow--bed now for this mommy!

Friday, February 3, 2012

Best laid plans...

Today has been another example of what I affectionately refer to as "The Brock Circus", otherwise known as our life.

Today we combined all of the following in a 12 hour period: a funeral, chemotherapy, school, a hospital stay, a birthday party and two trips to Sainsburys. As you do.

This morning I went to the funeral of a friend and our former neighbour Geoff Banks, who passed away last month from cancer. I really wanted to go even though I knew it would be hard, but I wasn't prepared for how emotional I became. I started crying when I walked in the door and saw his picture and his children greeting the attendees. I started sobbing (the embarrassing kind with snotty sniffs and all) when his sons went forward to carry the casket. I miss Geoff, and am saddened at his life shortened...but I am also all too aware that it was shortened by the same disease that we are currently fighting in Adam. It was a beautiful service and his family held up well--all the same the experience left me drained as I confronted for 45 minutes all that I don't want to think about and hope and pray I never have to.

Next stop, Adam's school to collect him and head to the hospital for his chemo appointment. It was all going swimmingly and on time too--we were on target to get to his brother's birthday party that started at 4pm, because by the way it was Caleb's birthday today! (I will post pics in another post soon) I wanted Adam's chemo done early so that he could play with Caleb and the others at the party. One of the medicines he was due today requires an hour afterward to make sure he doesn't react, and I had allowed extra time for that. So far so good.

Then I noticed that he felt warm, and saw some little red dots appearing over his stomach and back. I asked the nurse to check his temp and it was well above normal, 39.2. Going to the party now? Fail. The nurse suggested we go to his room to rest a bit and see how he got on...well, within 10 minutes he was vomiting repeatedly and his fever had gone up to 39.7. I'm not even going to try at this time of night to do the calculations...needless to say it was much too high to even think about going home. Blood cultures, check. Full blood count, check. Vomiting bowl, check. Waiting, check. Change my clothes as soon as possible? Check!!

Brian walked up after depositing Caleb and Agnes at the party and designating someone to watch them...luckily I had booked an indoor play place at the last minute, having changed my mind about doing it myself at home. Phew! So he walked in and I handed him a stinky, sleepy and retching Adam and headed to the car--I had the cake in the car so had to get it to the party at some point! The kids were having a great time and everything went smoothly from there. I have great friends--did I say that clearly enough? GREAT friends, who drop everything and put my children to bed so that I can go to the store and back up to the hospital with Brian's stuff.

At this point we have no results from the tests so are assuming it's a vomiting bug that will run it's course, sooner rather than later we hope. The IV fluids are up, he has been sleeping since 5pm, IV antibiotics just to be safe and still waiting to see how he is tomorrow. Our great friends are also going to watch the kids so we can still try to get to this concert we have booked and have been looking forward to for months. Under normal circumstances I would never leave Adam in this state, nor would I ask anyone else to look after him. BUT, nothing is normal anymore and I know we have to try and trust. Our friends will take good care of him, and this is nothing that won't correct itself in a few days at most.

I will post more, including pics, when I get the next chance. It's bath and bed for this tired mum now.