How far would or will you go?

Most parents would do anything to keep their children safe. But what can parents do when their child is sick with a deadly disease? And to what length will they go? As I reflect on the past 5 & 1/2 years of Jack’s life I could write a very long list of sacrifices I made. … Continue reading →

Defining moment

Wednesday, January 23rd 2009 MPS entered our world and today Wednesday, January 23rd 2013 marks 4 years since Jack’s diagnosis. As I have mentioned in past “anniversary” posts one never forgets that defining moment. That very second you life goes from clarity to upside down, and blurry. I still recall the room, the people present, … Continue reading →

Striving for balance and running out of chocolate

The recent lab results are back and Jack’s antibody titers continue to decrease. Still not where we need to be but down enough for our oncologist and geneticist to take away the booster drugs (the big guns that we dislike) and begin the maintenance plan. . The team is confidence the titers will continue to … Continue reading →

Bursts of energy

Life is all about leveraging small bursts of energy… Jack and I are recovering from our 6 month round of chemo. Yes I include myself because last week was quite traumatic. Jack reacted to IVIG, at home. He had labored breathing and wheezing. So scary! And one of the home nurses who was caring for … Continue reading →

Gift without wrapping paper

Happy holidays! Amidst the food, toys, returns, friends/family, back to work, or wherever your at with this holiday week I wanted to share my favorite gift. The gift that came yesterday, without any wrapping paper or a bow. But certainly the best gift! Jacks antibody titers are down, they have made a significant jump downward. … Continue reading →

moving forward in 2013

Jack had his last round of chemo on Friday. He will have a full week to recover and to enjoy his favorite holiday. He is in good spirits, just dealing with fatigue and some stomach problems. January 3rd we will be back in the hospital all day for blood work and Arzerra. On the 4th … Continue reading →

Alive

With Jack not receiving chemo this week I am totally cherishing the freedom from stress. Its wonderful, its like a vacation! Today was his enzyme infusion and it was such a simple task compared to last week 4 days of chemo plus enzyme plus a handful of yukky drugs (steroids). Instead of manic mom this … Continue reading →

A new meaning to chemo

The past 2 weeks Jack has received increased amounts and added chemo drugs in hopes to decrease his IgG antibodies that have plateaued. The regimen has really been difficult on his body and mom’s heart. Jack has been experiencing a whole new level of side effects…vomiting, to anxiety, to combative anger, and sadness. It’s really … Continue reading →

This and Thats in a small sterile room

We’re back! Today starts the new chemo protocol to really knock out these antibodies fighting his much needed enzyme. He will take 3 additional oral drugs and receive an additional intravenous chemo. A lot, a lot, a lot so please keep us in your prayers. 8 weeks and counting! Oh and pending labs are not … Continue reading →