The Blessing Of a Double Milestone.

When Mac was four, Mike and I felt pretty comfortable with his hemophilia.  We were confident.  We thought we had it all figured out.  He gets a bleed . . . you take him to the ER and they infuse him with an IV.  Simple.  Mac had gotten really good about sitting still.  Heck, at 3 years old he would even pick out the vein he wanted 'One Shot VanderTuck' (his favorite ER nurse) to use.  So when we walked into his yearly hemophilia clinic after four years of getting comfortable with hemophilia . . . hearing that he would need a port in his chest devastated me.  I didn't expect it.  I was comfortable with the way things were.  I had become complacent.  A port just complicated things.  It created a new world of worry and concern for me and my very predictable life.

But MacKale was becoming more active, he was having more bleeds and we needed to treat him more often to avoid bleeds rather than react to bleeds.  A port would be placed in his chest and Mike and I would need to learn to administer his factor through it.

What!?   I needed to stick a needle into my four year olds chest, and, oh yeah, the port was a direct line to his heart and so you had to be very careful not to screw it up and to maintain sterile environment so there would be no chance of infection ever or it could be life threatening.

I cried!  I mean, I sat right down and I bawled my eyes out.  I was overwhelmed with the thought of dealing with this 'thing' that would be placed in his chest.  I freely admit I am not good with nursing duties, needles, procedures, blood . . . I have always said, Mike is a much better nurse than I and if he ever wanted to leave the resort/real estate industry, that's the career he should head towards.  But for me . . . I was petrified.   The little boys were only 1 and 2 years old and we had a huge doberman . . .

how do you maintain a sterile environment with those dirty buggers running around?  It seemed impossible, improbable . . . but we did it.  Mike did it . . . and even I did it.

I'm not going to say that I ever enjoyed it, but I did became very confident after so many years of using it.  That port provided so much freedom for MacKale and all of us really.  He was able to join in sports . . . he played soccer . . . skied . . . wrestled with his brothers . . . road a bike  . . . all because we could simply infuse him at home whenever he planned to 'play hard.'

We made it very clear to MacKale though that his port was not a long term option.  It was easy and convenient when he was little, but it was a short term solution to a long term reality.  He would need factor for his entire life, but while the port afforded us freedom, it also wasn't something we wanted him to depend on.  Eventually, he needed to learn how to infuse himself by finding his vein and administering his factor.  I wanted this independence for him.  It would provide him even greater freedom.  Freedom from Mike and I . . . to grow up . . . confident and self-sufficient with his hemophilia.

So we put 'self-infusion' in his mind very early in his life.  He started attending over-night hemophilia camp when he was only 6 years old . . .  (I know . . . what on earth was I thinking.  He was just a baby!)  . . . and, of course, he loved it!  He has been every year since. He got to hang with kids who had hemophilia just like him, he had role models and he was able to practice infusing in a safe and nurturing environment.

All that prepping gave him the confidence to 'poke himself' at camp when he was just 8 years old.  It wasn't pretty and it wasn't perfect but he earned his 'butterfly award' and it gave him the will to try it again and again each time he went to camp until last summer, when he was 11, he came home from camp saying, 'I'm done!  I want to infuse myself and I want my port out.'

So that summer we did some training and practice, and Dr. Mitchell gave us the go ahead to let him infuse independently at home and make plans to get his port out.  He thought Christmas time would be a good time to do it . . . you know, so it wouldn't disrupt soccer season.  It was an exciting time . . . we had become comfortable . . . comfortable and complacent and confident that everything was going just as planned.  Mac was going to gain that independence and that port was coming OUT.

But then you know  . . . life happened . . .

 . . . and the port stayed in . . .

we counted our blessings at the time that MacKale had the port.  It afforded us one less surgery . . . one less thing to slow down the start of his treatment . . . but who would have known that not all ports are the same.  When MacKale started chemo the oncology nurses would all get confused looks on their faces when they first accessed it. 

'This is a single lumen!' 

You see, most cancer patients get a double lumen which means you can literally have two IVs of meds going in at one time.  Double lumens are like the Cadillac of ports. But MacKale had the compact, fuel-efficient, 210,000 miles, 7 years-old-but-still-going-strong, never-had-an-infection-even-one-time, take-that, perfect-for-hemophilia patients, single port!  And we made it work . . .

well . . . it worked until about January when that poor little port that could . . . couldn't anymore and so out with the old and in with the new.  MacKale got himself and new 'double lumen' port of his own.  And remember how I cried and bawled with the thought of dealing with that old port the first time?  Well, I didn't worry about this new port at all .  .  . a ports a port right? When it came to ports, we were confident and comfortable.  We knew our way around.  Heck, we had been though hemophilia, chemo and limb salvage surgery . . . a port was NOTHING to give a second thought to . . .  but then it was!  Because these new ports weren't like his old one.  The one that I could have hit with my eyes closed from across the room during a black out was one thing.   I mean, literally, that old port I could have accessed with my eyes closed, but this new one . . . it was different.  The placement was funky, the shape of it was completely different, it was in much deeper than the last port and  . . . I'm not going to lie . . . I cried . . . and I bawled . .  . again!  Because suddenly . . . I wasn't confident or comfortables  Mike and I both had our share of 'misses' and when MacKale was in so much discomfort because of his leg and having chemo, causing him discomfort by infusing him poorly, by missing . . . that was a very difficult thing for either of us handle.   But we got better and we became less apprehensive . . . I still miss our old port, but I've made peace with the new one . . . just in time to bid it farewell.

Yep!  That's right!  After chemo ended in June, MacKale waited to head back to camp to try infusing again, but when he returned home, once again, he said, 'I'm self-infusing. I want my port out.'

He would have liked to have had it out sooner.  He knew there was a buck out their with his name on it and he couldn't rifle hunt until the port was out, but those nasty scans in October that showed suspicious spots on his lungs put a bit of a  delay in his plans.  So instead, here we are, almost exactly a year after the time he originally wanted to have his old port removed.  

This trip to DeVos has a very different feel to it for all of us.  It's a wonderful, jovial, almost celebratory feeling.  MacKale told me . . .'This is a celebration, mom.  I'm getting my port out.  I'm not coming down for chemo. And even though I'll be on the 9th floor for a couple of days . . . you can't make me walk the halls!'  (I never realized I was such a slave driver when it came to those laps!  But I guess I was!)  It didn't take much for him to convenience me that this celebration also needed gummy worms, Pringles and a box of little Debbie Brownies.

I love that he feels this way, because really, port removal for so many cancer patients is truly the mark of the end of treatment, but additionally, for a child with hemophilia, it's yet another mark . . . a mark of true independence . . . a coming of age . . . a graduation of sorts.  MacKale will get a double dose of 'ye-haw' and 'hallelujah' with it's removal and that is a reason to celebrate.

It will be good to get home and return to a boring, mundane, and blissfully simple routine once this milestone is behind us.  But as much as I want us to be normal and boring again, I pray that this new freedom does not, once again, make us too complacent and comfortable in our own lives.  Because you know, complacency has a tendency to be a dirty rotten jokester.   

It lulls you into believing that you can handle everything on your own.  That you alone are in control, that your life is traveling along as it should and according to your plan.  You forget the times you were paralyzed by fear and had only your faith to cling to . . .  And when you least expect it,  life will happen again and you'll scramble to find Him.  

Why is that . . . why do we so easily cling to our God in sorrow, when we are full of despair and fear but when we are joyous and when we celebrate and when we are comfortable, it is often so easy to forget to share these moments with Him as well?

I think about this a lot.  I pray over it.  I am trying to make a conscious effort to keep my God close to me, not just during my trials, but during our hours of quiet comfort too.  Not just to seek him in my days of paralyzing fear for MacKale and his future, but to look to Him when I am at peace, confident and comfortable so that I can find ways to be strong for others.  Because that's really what it's all about . . . it's about what we do from here.  What comes next . . .   But I'm not perfect.  And thankfully God understands that this family is a work in progress.

After weeks of peaceful, blissful normalcy, I pray that my complacency will not cause me to lose my urgency to fight childhood cancer,  to give aide and an ear to families struggling with a child or family member who is ill, it will not allow me to forget to love on all four of my boys every chance I get, to laugh, spend time with my family and friends or to find time for my faith.

So today, as we take this next step towards a comfortable, normal . . . (and by steps--I also mean--he literally walked into the hospital this morning on his own two legs -- can I get a hallelujah?)

I want to remember to give all the glory to Him for each and every day--good and bad.  Yes it has been a hard year.  But it has also been an amazing year as well.  God has placed us on this unbelievable journey as a family . . . and you have all travelled along with us.  What a gift.  And while I know there is a fine line between faith and complacency, I am not naive.  I know . . .  we all know . . . that those scans will come every three months.  There are no guarantees.  We know what can happen, but we choose to trust and have faith that He has us in his hands and will not take us down a road He will not travel with us.  That promise to carry us when we can not walk alone is what we hold on to.  So, whatever comes our way, we will continue to give Him praise, cling to His side and look for ways to show others His amazing love.

And with that . . . if you can spare a little holler up to the Big Guy, MacKale just got out of surgery, and we are parked back up on the 9th Floor of DeVos.

His hemophilia keeps us here until Saturday and then we'll travel home . . . during another predicted snow storm.  We would love to have prayers for an uneventful hospital stay and safe travels to and from DeVos.  And while you have His ear, give Him a big 'thanks a ton' for all of His answered prayers, for all of His blessings and for all of His abundant goodness.  God truly is SO good.

As always, you all continue to amaze us with your generosity of friendship and faith.  Thank you all.