A Child is Born
3-4 years ago a healthy baby was born. Born to parents who were graced with one of life's greatest gifts. Just as a baby takes its first breaths you are changed forever. You will now know love in a whole new and completely different way. An indescribable way. And at that very moment ~3 years ago lives changed. The lives of those parents; the lives of a family who's very own gift was being treated for blood cancer. 1 birth - two lives - paths to cross. Unbeknownst to both.
The Greatest Gift (of Life)
If the "greatest gift" is defined as the birth of a child, than in this instance, there was a duality of the greatest gift. As one new little person proceeds with health; the another in a engrossed in the treatment of cancer. At some point those parents were asked if they would be willing to have the umbilical cord blood harvested and saved for the potential treatment of someone in need. They said yes, they saw the potential importance. And so, simultaneously as they received their gift they gave a gift. A gift that quite frankly is critical to Avery and her ability to fight, her ability to survive. The gift of life for Avery. Wow, consider that. Now imagine this. Those parents are living their lives right at this very moment not realizing the monumental impact they have had on our lives. If they could only know, then perhaps they would worry less about all the crap we all have worried about at some point or another. After all what really matters in life is health, and the health of loved ones. Well happiness too of course. But they are mutually dependent. You can't be happy if your health is in flames, and vise versa.
The Rasmussen's catch a break:
Today is day +8 post transplant. And many of you have noticed the absence of Avery updates. Another age old adage holds true. No news is good news. Avery's is "fantastic". She continues to be on drugs 24 hours a day. Sure they have their costs but we seem to have a balance. Its hard for us to understand how things can be going this well, which absolutely not the norm. I think this is due to a couple of things. First the 6/6 transplant match and compatibility, and the simple fact that Avery could very well be "conditioned" for her body to handle such a hard level of drugs. A tolerance of sorts. Of course this is just me processing things, certainly not scientific. The Team really does not know why from patient to patient why one does better or worse. We continue to be aware that things can change very very quickly. Our two biggest challenges continue to be 1) Mouth Care: due to the chemotherapy and the transplant the most rapidly dividing cells die and shed the fastest. Guess what, that's your mouth and throat. So cleaning is needed to prevent infection. That is done with a sponge on a stick. It looks like a sucker. Avery is required to cleanse her mouth 4 times per day with either a minty flavored chlorhexidine solution or salt water. Imagine this: go kick a hungry grizzly bear in the face, then hold it down and brush it's teeth. But that's the easy part, now escape with your life. Actually she's been improving and now doing pretty well with this, there is just a period of protest. We have figured out how to be coercive. 2) Eating. Due to mouth and throat sores Avery is interested in food but cannot eat. She is getting her nutrition intravenously. Aside from that, Avery is on 11 drugs all day every day. Anti-rejection, bone marrow suppression (to allow for the transplanted cells to populate), anti (fungal, viral, biotic), anti nausea, pain, liver and gallbladder meds, and misc over the counter stuff. That's a lot for anyone to put up with, but again we shake our heads knowing that the first 4 years of treatment were simply to get ready for all of this. I have said it before and I'll day it again, The fact that things are "uneventful" to us is simply shocking and signal what Avery has been though. Step into this scene without experience and surely a parent would be horrified. So she's good for now, with some ups and downs. Things aren't supposed to get dicey until day +14 through +40. Lastly we are at the leading edge of her going a little bit stir crazy. That will be a focal point of the next update.
10 Years to the Day
Today, as we continue to care for Avery we think about the milestone marked by this very date. June 3rd, 2015. 10 years ago Kristina and I married. A day in which I vividly remember walking from the dressing room to the front of the church at about 5:25pm. As I walked I said to myself, "huh, I can't believe I am not nervous". And, that was without the aid of cigarettes or brandy. That sense of calm was 100%, seriously. That day I looked to the future. When you get married there are things that you forgo, (partying like a rock star for example) but they are certainly offset by the things you pick up. One thing in particular was in my mind at that time. I was absolutely convinced that one day, if blessed with the greatest gift of children, Kristina would make exceptional mother. Being right about that has made up for a lot of things I have gotten dead wrong. Not only has Kristina been stoic through Avery's health crisis, she had continued to advance professionally having secured a great deal of responsibility a Deloitte. As if that's not enough she has unwaveringly supported me in the challenges I have taken on to show solidarity to Avery. Suffice it to say this family has been able to both endure and endeavor in a time where our faces have been shoved into a volcano because of Kristina's fortitude. As I shake my head in awe with my bushy eyebrows raised pointing to the sky - I often think to myself "staggering". Me on the other hand: if marriage had a 10 year contract renewal I would be sweating bullets.
1) A Blessing from Fr. Malone pre transplant
2) Are you serious?
3) Avery and her Donor cells
4) Not feeling so good
5) An Angel sleeps
6) Avery's room has a Flux Capacitor
7) Avery stands on my chest "roughhousing"
8) Are you talking to me?
9) Anthony Skogen reads Avery a bedtime story