January: While staying at the Ronald McDonald House this summer, we met a variety of families who had children with a variety of conditions, and none of them are easy to handle. But, the ones that struck me as the most unfair were those children who had gone through cancer and all the corresponding harshness of chemotherapy, only to find out that the very same drug concoctions that had saved their precious lives had caused their hearts to enlarge and stop functioning correctly.
Modern medicine is fantastic in so many ways, but still has many drawbacks with all the side effects. Its a scary proposition when you have a child on multiple drugs with multiple side effects. I did read online from a doctor that one of the reasons they switched from single immunosuppressants to a combination of two or three immunosuppressants was to cut down on the side effects from high doses of the one - but just like with chemo medicine - there are great and necessary benefits, but also horrible and scary drawbacks. Nothing is perfect...
February: Over at CHD-UK there will be a great series of blog posts celebrating stories of individuals who have experienced congenital heart defects. The first story is truly inspirational - a man who came back from near-death and heart surgery to complete an Iron Man Triathlon!
This post reminds me that I need to get on writing letters to city and county officials about declaring a CHD recognition day in February. Good reminder...
March: Today I have a special blog entry! I am reviewing a great new children's book called Danny the Dragon "Meets Jimmy" by Tina Turbin and illustrated by Aija Jasuna. The book is about a little boy Jimmy who finds a special shell at the beach and brings it home. Soon after getting the shell home, Danny the Dragon pops out of the shell with "bright red shoes," "a yellow backpack," and wings!
An awesome book that Bean loves looking at, even though she is not patient enough yet to let me read it to her in totality.
April: This was posted on one of the listservs I am a member of and I thought it was cute. Not sure who should get the credit for it, but thought it was worth sharing and works well with my Thankful Thursday post:
The post was a job advertisement for a parent - very cute and very true to life!
May: So, I thought it would be interesting to look back over our Carepages and see where we were a year ago today. Interesting entry - Mackenzie was still in the hospital from her FIRST stay (a week at our local hospital with what was thought to be RSV, then transferred to Sacramento's Sutter, where her enlarged heart was discovered, so after a week she was transferred to Stanford's Lucille Packard), and had just been moved to the infamous "3rd Floor" where the non-ICU patients go (sometimes called the "step-down" floor".
'Nuf said!
June: We got great news yesterday! Bean's latest biopsy came back a zero for rejection!
Only zero since the transplant, so I will relish it a bit. It doesn't seem like it was that long ago, but it also seems like it was forever ago. I distinctly remember thinking that we had it all figured out and would have zeroes from there on out...but, no. Its been the only one.
July: I didn't write a thing in July. That is kind of sad. I wasn't even working as an excuse. Oh well...
August: And to that I say "bleh" - which is what it looks like Bean is saying in this picture! Sorry I've been out of touch for the summer, but it was quite an adventure with my husband being gone for six weeks, a two week trip to AZ (half way through which my husband joined us), and just a lot of chaos in my life and schedule!
And there is my excuse for the lack of posting in July and no posts until the middle of August. The "bleh" is referring to Bean's annual cath which was scheduled for the next day.
September: Some refer to today as Black Friday, but since my days as a retail clerk, I refuse to participate in the shopping extravaganza. So, to me, today is the day after Thanksgiving - or leftovers day!
October: Health care is obviously a big concern to me and my family. We no longer have the option to be unaware or nonchalant about that part of our lives.
A post about health care and some things that were unknown to me prior to reading this doctor's blog post.
November: Just thought I would share a few of our highlights from Halloween! We celebrated the whole weekend, with Bean's Grandma and Grandpa from Bakersfield in town.
That was a GREAT weekend. I really enjoyed Halloween this year!
December: I try not to look too far in the future when worrying as there is plenty to worry about on a day-to-day basis, let alone worrying about things that might or might not happen years down the line. But, I must say that every once in while an email thread on one of the CHD or transplant parent lists I'm on will start some future-focused worry.
And ending on a worrying note...appropriate I guess. Its always there...underlying everything. But, there is also a ton of good in these blog posts.
The year ahead - who knows what it holds? I hope to blog more regularly here and definitely don't want to have a month with NO posts next year! But, we shall see! I wish you all a Happy New Year!
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It has been a long time since you have posted, how is everyone?
ReplyDeleteJanuary:When I got my Tx, I immediaately got 3R rejection, so that meant IV medication and I had to go to the unit where people go to get chemo. The first thing I though was I was so happy that all I had to have was a heart tx-I could do that-I could have never have done cancer. This year I am doing a 100 mile bike ride with team in training for cancer research. The woman who is my transplant twin-she got transplanted right after me-like we were back to back and shared a recovery ICU room for 3 days-had to get a heart tx hecause her heart was ruined from cancer.
Feb: There is a guy in so cal that has a heart tx and is an iron man-Kyle Garret-he is on facebook if you are on there
June: Relish that 0-I have NEVER got one
Happy new year