NOT steroids week

More favourite photos. 

Today was a long day.  Today should have been the beginning of "week 1" of another round of chemo, meaning Caleb would get Vincristine, his leg needle, and begin steroids and 6mp.  His counts were too low today, however, to begin again.  We are delayed for a week in the hopes that he'll be back up again next week.  I'm quite sure he will be.  I don't really know why they're so low, except that I know this last round hit him harder than other rounds have.  He was so totally wiped out 3 weeks ago, week 1 of the last round, that it's less suprising that he's so low now.  With the venogram and sedation last week, I think that perhaps his body didn't have the restful recuperating week that he needed and so he's still low.  Let's pray that this week things improve.  I must admit that I am not entirely unhappy that we're postponing dex (steroid) for a week; it is one of my least favourite parts of his chemo treatment.

We got results from Caleb's venogram today too.  There is still a clot (I really dislike the word, but there aren't many other good words to use--thrombus isn't much better) around the tip of where his port line enters his blood stream.  The TPA that we used before probably helped to open it up some, because it's "non-occlusive," which means that it doesn't block the port line.  This means the port is still functional, and is good.  Caleb has started blood thinners--which don't actually thin the blood, but they do prevent the clot from further developing so that his body has the opportunity to break it down.  The drug asparaginase, Caleb's leg needles, can hinder his body's ability to break down the clot.  For the duration of asparaginase treatment, Caleb will be on blood thinners.  Asparaginase goes until April or May.  We're delayed this week, and could be delayed again, so it could be April, but possibly May. 

Blood thinners are really not a fun thing.  I learned today how to give subcutaneous (subQ) injections, reluctantly but willingly, as we do everything in cancer treatment.  For the first few needles, except for the one he gets at midnight tonight, a home care nurse will come to administer.  After a while, it will be me, and possibly Tim.  We ice the site, and then do the injection.  We use the same type of needle that people with diabetes are familiar with, and inject it into his belly, lots of flesh there!  I shudder to think about doing this morning and night for 30 weeks.  Thankfully, I have already had a few conversations with parents who have had to do this type of journey when their children were diagnosed with diabetes.  I know that people have gone before me and will go after me.  This really helps.

Caleb was so not happy about this change.  It was heartbreaking to stop him as he wheeled around the empty waiting room on his scooter--we were last seen today, well into the afternoon because we needed special attention from the doctor.  He burst into tears at the thought of needles, and wept with grief.  We were, and I suppose are, very sad.  Somehow it was a blessing, though, to watch the nurses--most of them done for the day--who were standing around and watching.  There were not many dry eyes around.  This helps, somehow.  The pain and sadness of a child as he handles bad news should never be taken lightly.  I'm comforted by their sorrow.  I am now reminded of the phrase "grief shared is grief divided" and its companion "joy shared is joy multiplied."  Knowing that they recognize Caleb as a brave soldier, that his tears are real, gave me courage to keep going. 

It's hard right now.  Right now it feels like blow after blow.  We remain hopeful, and thankful for a joyful 4 year old, 3 year old, and 2 year old.  Many laughs at home tonight, over supper and before bed.  Things are hard, and God is good.  This too shall pass.    Thank you for your prayers and encouragement.