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.

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 find...my 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.

Re-port (get it?)

Adam's blood counts returned to "normal" earlier this week and his fevers subsided, so he was discharged home from the hospital on Tuesday. We had one blissful day off, and wouldn't you know we spent it dodging the pouring rain! That was a short reprieve, however, and today was back to the grind.

It has been a long day, filled mostly with fasting and watching elevator doors, our increasingly familiar pre-surgery routine. Today he was in for his port to be fixed, have a lumbar puncture and restart chemotherapy with a drug called Methotrexate injected into his spinal fluid. We waited until 3:45 before he was called to surgery, and into the early evening before he came back. I marvel at how difficult it still is to send him in for surgery, even when we've done it almost weekly for nearly two months now. I do hate waiting, and this last few weeks has been a crash course in it...you would think it gets easier, but really it only gets slightly easier to mask how not easy it is! Waiting for doctors, nurses, surgeons, pharmacists, medicines, procedures, elevators--it all makes me a little bit crazy!! Mostly I find I am waiting for information and (hopefully good) news that comes slowly, in drips and drabs. Add in a sweet wee boy who doesn't understand why he can't eat, why he has to get another needle in his arm, why he has to go to that room again (theatre), why he has to take medicines that make him feel bad...it's tough to explain and even tougher to live.

Back to today: the surgeon could not fix the port, and ended up putting a new one into the space under Adam's left armpit. It's not the most convenient of sites, and Adam seems quite sore, but if it works that is all that we can ask. So far, so good. A spot of dinner, some pain meds, and an hour or two to make sure he's fine and the boy will come home again for another good night's sleep in his own bed. Tomorrow starts four days of IV infusions and then two days off.

California Oma arrived today, and was immediately plunged into the deep end, taking a taxi to the hospital, taking turns on the playground with one child, then another, then waiting for Adam to come back while I dashed around town to swim lessons, hang out washing, and come back. Whew. We are tired. If that's not a good way to deal with jet lag, I don't know what is!! We are surely grateful for the extra hands, and hopeful for what the next three months of her visit will bring.