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.

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.

Vertigo

Whew, don't even know where to start about yesterday, it was such a topsy turvy day...14 hours spent in the hospital, split fairly evenly between Brian and I and our necks, which we have decided take the brunt of the hours spent laying around with Adam. The long and short of it...

Adam was supposed to be in the hospital at 8am, "fasted" (meaning having had nothing to eat for at least 6 hours) and ready for his bone marrow aspiration and lumbar puncture, the grand start to the new block of chemo. Unfortunately for him, and scarily for us, the incision site where his port was inserted had started to open up. I'll spare you the gory details, but it was obvious they could not do the procedure, not straight away at least. It took four hours of waiting for a surgeon to be free, and Adam eventually went to theatre at noon where he had the two "normal" procedures and his wound fixed. The surgeon stitched it up, taped it up, and put a clear plastic dressing over the whole thing. Said to leave it alone for 7 days...sorry, doctor, did you say 70 days?? I'm not touching that thing with a ten foot pole, only hoping and praying that this time it will heal.

At any rate, they were able to use the port for his chemo, another "big gun"--you know it's a nasty drug when it takes 30 minutes to give the drug and four hours on either side for the fluid flush to make sure it doesn't stay in Adam's bladder and cause damage!! During this time Adam ate, played with his brother and sister, visited with friends, ate some more, watched TV, and did some good talking. He was looking brighter than he had in weeks, some small consolation for the morning's scare.

Also during the afternoon came a chat with his doctor and the good news: Adam is now in remission!! The bone marrow sample in the morning showed less than 1% of leukaemia cells in Adam's blood, a very good sign albeit a week late. We were pleased, and glad to hear that the plan at the moment is to carry on with the next two rounds of chemo as planned. He is to have a blood transfusion today to help boost his red blood cell count, but otherwise the rest of the week should be "normal", whatever that means!! It's astonishing how fast a "bad" day can turn "good", and vice versa. Guess I better sit back down before the dizziness hits again.