Friday, August 21, 2009

Life is a beach

A beach. And sometimes something that sounds a bit like "beach" but isn't. I'll talk about that first.

The Boy is not making counts for chemo. He was on Neupogen for too long, causing his platelets to stay too low. Furthermore, his hemoglobin is really staying low, not recovering at all. Part of that is the Vasotec, one of the BP meds. But his bone marrow is really shot.

The Wilms Tumor email listserv has been a great resource. I have been able to ask lots of questions and learn from other parents who have gone through what we have. The parents have children in various phases of the journey. And one of the things that sticks out in regards to The Boy's protocol, called the Stratum-C (not sure why), is that many people didn't finish it but still are off treatment and NED. As in, no evidence of disease at each scan. One girl just finished the entire thing, and people on the listserv were responding with congratulations of course and remarking that so few people finish it. I had heard that before, and I asked The Boy's docs if he will complete the protocol. They said that he will.

If that's the case, we won't be done until the beginning of 2011 at least. Not with all the delays and him being on medicine that screws with his bone marrow in addition to the chemo drugs.

If chemo does not start on Monday due to hemoglobin being too low and him needing yet another tranfusion, we will have to postpone or cancel his birthday party.

Cancer sucks.

But on the beach side of things from my title, we went there yesterday!!!! We drove to Sandy Hook, leaving at 4:30-ish and arriving about an hour later, even factoring in a feeding stop for Tiny Guy. It was a great time to go in that it wasn't too hot and the sun wasn't too bright. The Boy was slightly less freaked out than last year but still very attached to Daddy. Daddy was great, though, doing an excellent job trying to acclimate The Boy to the sand and water. Tiny Guy really enjoyed the ocean sound. He likes the outdoors, if I haven't mentioned that a few times.

We packed dinner. Smart, because between my diet and The Boy's diet, it would have bern tricky to find suitable meals.

It was only okay overall, but going to the beach and just stepping into the ocean a bit makes me feel like we didn't completely miss out on the summer experience.

I failed to mention that I attended a La Leche League meeting last month. I attended again today. Musical Daddy was a bit intrigued that there is an entire group dedicated to breastfeeding and he was wondering what we talk about.

Basically, in addition to talking about breastfeeding, we discuss parenting issues, nutrition, and health. The leaders are trained (not sure how but if my life weren't so crazy I'd want to train too) and have extra knowledge on these subjects. I have gotten help with wearing Tiny Guy in the sling. I have offered advice about working and nursing. I have also seen lots of cute babies.

Why does such an organization exist? Because so many mothers want to nurse their babies but have never seen a mom nurse a baby and don't have anyone to ask. Decades ago, women were convinced that something made in a lab from the milk of another mammal that can be measured was better for human babies than their mother's own milk. How screwed up is that? And we clearly have not recovered. Hopefully my boys will see nursing babies as the norm.


Sarah R said...

I am sorry to hear about The Boy's counts. UGH! Cancer really, really sucks! I think of your family often (I even talk to my mom about this sweet little boy who is 5 days younger than Andrew) and I really hope things start working out a little bit better for you.

Glad you got to go to the beach! You guys need to get a little bit of summer before it's done...

I would love to be a part of LLL, but the closest one is 45 minutes away in the middle of nowhere. :( I should check online and see if they have opened up any new LLLs, as I haven't checked in awhile.

I, too, am hoping Andrew knows when he sees a mother breastfeeding in public that she is doing a natural thing for baby, and that she is simply feeding him. I cannot believe that in 2009 there are people who think it's indecent exposure or something sexual. Poo on them!

And yes, my goal is to help people realize how many breastfeeding myths there are, partciularly that formula is somehow superior to their milk! Hello! Breastmilk has both stem cells and immunities.

Rebecca said...

Yay for the beach!!! Boo for cancer and low counts! :(

JC said...

That sucks about his counts. Summer's counts take a long time to recover too and when she comes off the Neupogen. Her platelets usually drop and have a hard time coming back up too. It really does suck, suck, suck. All of it. The unpredictability of life. Maybe you could postpone the chemo until after the birthday which would also allow his body to recover more. I'm not sure how strict they are about following the chemo protocol. I really want to postpone Summer's next chemo a weekso we can take her up north with us, but not sure they will go for it. Is time really of the essence??? I am so in the same boat as you, feeling your pain. Glad there are some positive aspects to your life though. They are what make life worth living. Keep your head up and think positive! We will get through this. Always praying for you guys.....BIG HUGS!!!

Sarah said...

Yes, cancer does suck! I think using stronger words can be appropritately used.

It is sad to hear the negative viewpoints on nursing. Actually, most of the time they are not even view points, rather they are rude comments. The world really needs more people like us and our families who are putting the word out there that nursing is the best thing for children!