I cannot begin to describe how this stress has affected us since his diagnosis. Not just in our relationship but our general demeanor and outlooks in life.
Just about two weeks now, Jordan Lee turned 4 a big milestone in age. At age 4, most kids are:
- entering preschool/kindergarten
- potty trained, for the most part
- chatting away
- playing their hearts out
- overall being a kid getting ready to start on this journey towards growing up
For us, 4 is a count down. Jordan Lee was diagnosed at the age of 2 1/2 (I like to be exact, sue me :P ). His third birthday came while he was still under intense chemo to retain his remission. As a matter of fact he was scheduled to be in the hospital the week prior for a treatment of high dose Methotrexaite (how ever you spell it). I wont even get into the details on how those treatments were >.<
This year, he is now in Maintenance which only requires visits once per month (not including emergency trips for fevers, etc).
We are counting down to the end of year #2 in treatment, rounding the corner to year #3, and praying that we make it to year #5 completely cancer free. What is significant about that fifth year? Year 5 means he is technically cured and any chance of a relapse is slim to none.
So where is this stress you may ask? Hes in remission hes a kid, hes healthy!
True, all true...but its the waiting and watching game. Any slight infection that may pass through our normal healthy bodies might give us some sniffles for a day, no biggie. That same infection that may give you or me the sniffles could lead to a fever, pneumonia, wonder, worry, praying his body can fight it off.
We experienced that first big worry back in April. Everything was going great, then he started to have intermittent fevers, he wasn't feeling well and we had no idea what it was. His doctors at Hershey where he is treated had no idea what it could be, possibly a virus going at the time, but no test came back.
They eventually admitted him and after a series of tests and observation for a few days in and out of the hospital they did a Bronchial type of test requiring him to be put under to shove a tube in his lungs and sample them for cultures.
That resulted in a couple days of waiting and jumping every time his Oxygen levels dropped below a certain point to make sure he was breathing OK.
On top of worrying about him, I had to worry about my work schedule, calling off not aware I could use FMLA Leave for the time. His mom had to worry about school, apparently having a sick child in the hospital doesn't count as an acceptable reason to miss classes to them. Documented or not.
I am just shaking my head thinking about all the things that we discussed and concerns going through that... Details spared!
So what is so exciting in year 4 for us?? All suddenly in the last few months we have made leaps and bounds in potty training, all he wants to do is pee standing, he refuses to sit!
He talks a lot... Angry Birds this and that... Thomas and the Angry Birds... lol its cute but annoying I will admit that.
But on the other hand.... considering what the other possibilities were at one point for children with Leukemia, I will take it!
He still has not gotten an OK for pre-school, but I hope that will come soon, I hear it can work wonders on behavioral problems. Most of ours are defiantly "only child" related, not having any other children to interact with.
So what am I out-looking on? First of all, I need to get my energy back up that is for sure! But, I cannot wait until
- We are able to secure a place of our own to live together.
- We can spend family time together more than a day or few hours.
- afternoon/evenings I am not working tossing a ball around, or just playing
- normal parent child interactions with out worrying about getting sick
Until then, hang in there. Take it like us, one day, one step at a time.
Its rough, trust me, but were all in this together some how.
Till next time!
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