Tonight my heart was heavy and I did not know why. I was lead to check on a blog I follow from time to time. His name is Will and he has been battling cardiac angiosarcoma for 18 months, the same rare cancer as my brother. Another young man stricken with the disease. Well yesterday he passed. I was shocked and still taken off guard. He was doing well, in fact he had just had the same surgery my brother had 9 years ago, and his was considered a success. So why did he pass so suddenly, I can not find the answers on his blog, but I assume complications from the cancer or surgery. It was a reminder to me, that as horrible as my brother's diagnosis is, he is one of the lucky ones, he is still alive. I do not know of any other patient who has lived this long with the diagnosis. Every person we have encountered over the years with this cancer, and I can count them on one hand, has passed away. Alex, for a reason I do not know, but am eternally thankful for, is still fighting, valiantly fighting. We have been given time with him, that these other families have not. I am sad for them and their loss, and reminded of the gift we are given even when the disease feels so cruel.
It brings to the front of my mind why it was so sweet to me to listen to my brother snoring a couple of days ago. That snoring would have been a nuisance to me 15 years ago, but this week, it was a gift. A gift that he was with me, sleeping so deeply, and in that moment alive and not in pain.
Will, I pray that you are resting peacefully now.
Sunday, March 28, 2010
Hospital Time
After Puerta Vallarta, I went back to Houston to spend a couple days with my kiddos, before heading to Dallas to be with my brother. After PV, Alex had to enter the hospital for round 4 of chemo on the ifosfamide regimen. Since the timing of our trips worked out well, I could leave the kids in Houston and stay with Alex in the hospital. I stayed up there for 2 nights and 3 days while Danielle worked and took care of homelife. Then on the weekend, I stayed with the kids while Danielle stayed with Alex. The hospital time surprisingly passed quickly and I loved just being with Alex. We have not just been together without kids or spouses since high school. We talked, watched tv, and played on the computer, not eventful, but nice. The chemo really takes a toll on him, but Alex doesn't complain. In fact, he is a hospital favorite. From the moment we entered the hospital, every person we met just lit up when they saw Alex and they would easily enter into familiar conversation. Alex has obviously made a point to get to know each person he encounters and they love him. One nurse even asked me if he had always been this wonderful. The snarky sister in me came out and I informed her that he was a mean, overprotective brother growing up, but he was pretty wonderful now.
As for the weekend, I had a great day with Austin on Saturday as we went to a butterfly exhibit, water conservation kids activity day, and then visiting Alex in the hospital. I do not think I have ever been alone with Austin and it was wonderful to get that quality time. He is the most affectionate young man and easy to be around. Lexi was busy at a dance convention, so we only had time together on Sunday, but her and I are always easy buddies. Mom and I hung out too. The whole trip seemed bizarre to be without my own kids, but it was nice to enjoy the time with family without the distractions of my three.
As for the weekend, I had a great day with Austin on Saturday as we went to a butterfly exhibit, water conservation kids activity day, and then visiting Alex in the hospital. I do not think I have ever been alone with Austin and it was wonderful to get that quality time. He is the most affectionate young man and easy to be around. Lexi was busy at a dance convention, so we only had time together on Sunday, but her and I are always easy buddies. Mom and I hung out too. The whole trip seemed bizarre to be without my own kids, but it was nice to enjoy the time with family without the distractions of my three.
Sunday, March 21, 2010
Puerta Vallarta
My brother and his wife are approaching their 10 year anniversary, this June. Given their tumultuous 10 years of marriage, many of which have been spent in and out of hospitals, they needed to take this time to recommit to each other. It was beautiful, wonderful and romantic. There is something special about two people choosing to do it all over again after 10 rough years, and awesome for their children to watch their parents vowing to love one another. Danielle's dad, Brian, performed the ceremony, which was poignant and personal - he would have made a great minister.
Brian and I had a short stay in PV, in Friday and out Sunday, but we flew alone, so that half made the trip for me. I read a book on the flights and slept, blissful flying.
Our kids spent the time with Brian's family. I was so excited for the kids to have this alone time with their grandparents. I remember being alone with mine growing up and it is special to have one on one time with your grandparents.
Thursday, March 18, 2010
Be kind to flying moms
I jinxed myself the night before our flights to Texas by telling my friends that I have never had problems getting fellow passengers to switch seats with my kids or husband so we could all sit together on the plane. After all, when you see a woman with 3 small children boarding a plane, most passengers would pay to escape being within 3 rows of us. Well not this trip. On our first flight I had to approach the entire row to explain I needed them all to move. Now that sounds bad, but actually, one person was sitting in my seat, the other got to escape their middle seat to sit in a window and the third unpleasant woman got my 6am wrath when she gave me lip about moving from her aisle seat to Myann's aisle seat one row up. She asked me what choice she had and I informed her that she was welcome to sit with me, Anders, and Shane and enjoy their fighting and whining or she could go sit in a row with 2 other adults. She continued to protest, but moved. Then the next flight I was in a row with all three kids, but Brian's seat was the aisle 3 rows up. No one around us would move so Brian could sit closer. To repay their kindness/stupidity, when the kids went nuts (after all it was 2 pm and we had all been up since 5am, makes for awesome kids). Some of the noise was squeals of joy, but 3 kids with one mom in a confined space inevitably results in fighting, squealing, and bumped seats. I did not try to contain the noise either. I was tired and irritable, and decided that my fellow passengers needed to see why it was to their benefit to have switched seats with my husband, so I could have his assistance. Later Brian told me that the noise was really bad and he could hear people commenting. He gets really bothered by the kids being loud, but I do what I can do and really careless about the comments and stares. We live far from our families, which means we have to fly. We fly A LOT and sometimes the kids are great and sometimes they are not great. At Christmas, they were awesome flyers, this trip, they were whiney and not obedient. Part way in to the flight, once Brian explained the situation to the mom and child nest to him, she offered to have Shane sit with her, so Brian could help me. After the switch and separating the kids, they were really good and all was quiet. Note to readers, if a mom asks you to switch seats, it is in your best interest to oblige.
The funny story out of it was Shane taking advantage and sitting alone. During drink service, two carts were parked next to us, blocking our access to Shane. We were trying to get him his sippy cups of milk and juice, when he was asked by the flight attendant what he wanted to drink. Brian and I listened attentively for his response, knowing what he would say. Shane, "Do you have Sprite?" Flight attendant, "Yes." Shane, "May I have Sprite please?" I know Shane was thinking, Score, I can have whatever I want. Soda is reserved as very special treats in our house and Shane knows this. I know he was being sneaky and feeling like quite the grown up as he ordered his own drink. Brian and I were giggling at the exchange.
The funny story out of it was Shane taking advantage and sitting alone. During drink service, two carts were parked next to us, blocking our access to Shane. We were trying to get him his sippy cups of milk and juice, when he was asked by the flight attendant what he wanted to drink. Brian and I listened attentively for his response, knowing what he would say. Shane, "Do you have Sprite?" Flight attendant, "Yes." Shane, "May I have Sprite please?" I know Shane was thinking, Score, I can have whatever I want. Soda is reserved as very special treats in our house and Shane knows this. I know he was being sneaky and feeling like quite the grown up as he ordered his own drink. Brian and I were giggling at the exchange.
Friday, March 12, 2010
Precious Logan
If you are inclined to pray, please pray for our nephew Logan. We just found out he has cystic fibrosis. He has had some medical issues for 2 years now, but for reasons I do not fully understand, his doctors did not feel it was necessary to test him. Well they finally did and Grandma Anne and her amazing maternal instincts were correct. He was confirmed to have it. Though a disheartening diagnosis, I am thankful to have an explanation for his past medical issues, and now his parents can move forward with proactive treatments and lifestyle choices. We love Logan and he is Myann's buddy. They are quite a pair when they are together. Just to give you an idea of his symptoms and why Grandma Anne was so concerned: he had a salty taste (Grandma Anne apparently likes to lick her grandbabies :}, he had foul smelling poop (ok, so most moms parents might claim this one), he had major intestional bloating, he has had consistent lung problems and has needed breathing treatments. This is a prime example of why parents and grandparents need to be proactive in their children's healthcare. His doctors insisted he did not have CF since he was gaining weight. Grandma Anne was insistent that something was not right with Logan. Instincts sometimes outweigh a medical degree.
Treatments for CF have come quite far in the past decade. I remember studying it in school when most CF patients did not live past their teenage years, but now many patients are thriving well into their late 20's and 30's. We are optimistic that Logan will benefit from future treatments and live a long life.
Treatments for CF have come quite far in the past decade. I remember studying it in school when most CF patients did not live past their teenage years, but now many patients are thriving well into their late 20's and 30's. We are optimistic that Logan will benefit from future treatments and live a long life.
Wednesday, March 3, 2010
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