Oct 13 09
Hi, it's Ali --
This post is going to cover a lot of topics…some happy, some sad.
First, Thank you for the many birthday wishes! It was a difficult day, but we made the best of it. As you know, I got the best tangible gift possible – Andrew’s Beads of Courage. I don’t think it’s possible for me to put into words how much these beads mean to me. In case you missed the previous post explaining Beads of Courage – Beads of Courage is a program at AI DuPont Hospital for Children for the oncology patients. Patients get a bead for each day of chemo, each day inpatient, each transfer to PICU, each transfusion, infusion, surgical procedure, line placement, tube placement, dressing change, rehab visit, days of dialysis, days of TPN, tests (MRI, CT, x-ray, etc.), hair loss, bone marrow aspirates, lumbar puncture, pokes (IV, etc.), unusual occurrences, special events, and special courage. The program started at AI in 2008 with the help of Brooke Saunders’s generous donation in honor of her friend Jack and our Andrew. Even though we were out of the hospital in 2007, I feel strongly that Andrew deserves credit for everything he endured, so his Beads were the only tangible present I wanted for my birthday. I’m sure it was difficult for my parents to go through everything that happened over again in order to get a bead to recognize each event, but I really appreciate it. The hospital put the beads into little baggies separated by what they mean. Because we were there for so long, and many things happened every single day, for some things they gave a special bead marking 100 rather than 100 single beads. They gave me 3 strings to put the beads on to form a necklace. I don’t think they truly realized how many beads they gave me…I had over 400 beads left after using up all 3 strings. I ended up needing 8 strings and we calculated that the “necklace” is about 30 feet long. I’m so happy to have this concrete proof of Andrew’s bravery. I knew and still know how brave he is and his amazing strength, but for others to see this, I think they’ll better understand just how amazing he is. My dad said they’ve never had someone with so many beads. That’s not really an honor you want to have in that it’s a reminder of how sick he was and what he went through, but to me it’s also a proud, amazing fact. To think that he went through all of this, never gave up, fought like crazy, gave us 166 bonus days, gave us more memories, told us he loves us a few more times is amazing to me. Each bead has a memory for me. While some are sad, the memories of me coming from school to the hospital and hearing that he asked for me while I was gone and I say that I’m there now and to hear him say “good. I love you.” is in some crazy way comforting. I’ll never forget any of the hospital memories, but the extra “I love you”s help me get through each day. He knows he’s loved. And I know he loves us.
Thank you to Brooke Saunders for getting this program off the ground at AI. Thank you to my amazing parents for giving me the best physically possible present they could and going through the painful history that Andrew endured to make sure I got each bead. Thank you to Mary Neumann at AI for making it possible for me to get Andrew’s beads. Thank you to Mary Sawin for getting his beads together for me. Thank you to the doctors who did everything they could for Andrew; because of your hard work and dedication coupled with Andrew’s unwavering will to live and strength, we were given 166 “bonus days” to make memories with our best friend. Thank you to all of you reading for following our story, caring for my brother, and becoming a part of our lives; without your support – during Andrew’s painful fight and my parents & my painful fight each day without Andrew now – I honestly don’t know how we’d get through each day. I can’t speak for my parents, but I check Andrew’s CB guestbook multiple times each day, hoping for some new words of encouragement from you or a story of how Andrew touched your life. Even the “hey, I was thinking of you so wanted to let you know” type messages – they’re great and MUCH appreciated!
Second, The Andrew McDonough B+ Foundation now has a Facebook page! All you have to do is type in The Andrew McDonough B+ Foundation in the search bar at the top and then click on us! This was started fairly recently, so if you want to join, we’d LOVE to have you be a “fan” of us! A cool thing about this page is that we set up a Discussion Board. With that, we plan on having new topics every now and then and your feedback is extremely welcomed and encouraged. Currently, the topic in the discussion board is: How has Andrew’s story, battle, and/or life impacted you? Nobody has posted yet... but you could be first!!! Also, thanks to B+ supporter, Sarah Parmacek, The Andrew McDonough B+ Foundation is set up as a Cause Application on FB. She set this up a while ago and it’s great! We have an astounding 4,399 members!! Who wants to be the 4,400th!?! Good work, Sarah! Thanks for being more technologically savvy than me and thinking of doing this!
Third, please keep the family of Jessica Easley in your prayers. Jessica fought rhabdomyosarcoma, a rare soft tissue cancer since her diagnosis in 2006. She went into remission February 14, 2007. Unfortunately, the cancer returned in April 2008. December 2008, Jessica achieved a second remission. August 28, 2009, her cancer came back. This time, her cancer was wrapped around her aorta and shoving her heart up against her chest cavity and invading her spine at T11-12. September 9, 2009, Jessica was sent home on hospice. Jessica wanted to live until her 11th birthday. Sadly, she went to Heaven this morning one day shy of her 11th birthday. Jessica fought ‘til the very end. Her faith was steadfast through everything. Her family is now going through their worst nightmare. While they know Jessica is in Heaven, they’ve just been put on an extremely difficult path for the rest of their lives. www.caringbridge.org/visit/jessicaeasley
Fourth, another brave little girl went to Heaven 2 weeks ago at 13 years old after fighting adenocarcinoma, a type of cancer that is normally not found in kids. Valerie Dalmau's incredible faith truly inspired me. I was in awe when I read her posting. I copy and pasted her journal entries with a picture of her from her CB and printed it. I hung it on the wall by my bed and am always reminded of how brave she is. Here are the excerpts from her entries that I have printed out. She is unbelievable. www.caringbridge.org/visit/valeriedalmau
September 22, 2009
“…I do have some sad news though. The doctors don’t have any more alternatives and I do not have much time here on earth. Scientifically there is nothing else to do but I know that miracles do happen so I am not losing hope. I just want to follow God’s will and I’m excited to go to heaven since Jesus will be the one who welcomes me! I will be doing flips up there and will be excited to join all of the souls in heaven including my mom and dad when their time comes!
Before I had cancer, I was not close to God at all. I didn't enjoy church, and I didn't pray a lot. When I got sick, I talked to God a lot more. When the doctors told me that I had a tumor, I would pray and question God a lot. I also got very mad at him because I didn't understand why he chose me. I remember what a trauma it was for me to lose my hair. It was only until later when I learned that the outside beauty was not so important. I always heard that from people, but I never experienced it….
…Whenever I had pain at home, I started to realize that it was a way I could connect with Jesus. I also started to pray the rosary, which is a Catholic prayer that we pray to Mary. I became very faithful and spiritual. I didn't know that I was changing the lives of so many people! Mysterious things would happen, like a complete stranger would bring me a really special necklace or a blessed rosary. I have a million rosaries now!!! What I am trying to tell all of you is that through this cancer journey I have been used as one of God's instruments to show people that God really is here and prayers work. I wish I could have been able to post one day here on caring bridge that I was completely cancer free, but I am able to say that I have gotten people closer to God and have changed people's lives. I am in grace with God and, Renee, I am not hiding in my house after reconciliation. I will be talking to God about you and how you are so special to me…. ”
September 28, 2009
“…Prayers are so powerful, you know, you just sometimes have to wait for the right time. GOD BLESS YOU! I am in the hospital with both my mom and my dad right now. They have an oxygen mask in my nose or I won't be able to breathe.
Strength has gotten away from both legs now, so I officially can't walk. I'm OK with it though soooooo, I'll be fine. (And a veeery important guardian angel)
Love Valerie”
Fifth, please remember the Pauley’s today and always. Today, October 13th, marks 1 month of Savannah being in Heaven. www.caringbridge.org/visit/savannahpauley1
LASTLY, (sorry this is incredibly long, but there’s a lot to be covered!), the 3rd Annual B+ Golf Outing/Auction was last night! It was a great night and B+ hero, Joey Borowski (www.caringbridge.org/visit/joeyb), and his mom both spoke to a captive audience. It was a bit chilly for golf, but it was for a great cause! More details will come later in my dad’s post, I’m sure…
I’ll end the post now before I go off on a tangent about all the Pink I’ve been seeing…expect more later, but I’ll leave you with this – In the midst of all this pink, DON’T FORGET THE GOLD! Research funds are scarce as most money is diverted to well-publicized adult forms of cancer, such as breast and prostate. The National Cancer Institute’s (NCI) federal budget was $4.6 BILLION. Of that, breast cancer received 12%, prostate received 7%, and all 12 major groups of pediatric cancers combined received less than 3%. Think of it in life years lost…Simply unacceptable. Now, cancer is cancer and any cancer is bad. However, I personally know 2 people who are breast cancer survivors and would much rather the funding go towards childhood cancer research. Ok, I need to stop before this journal entry becomes 5 pages longer…
Way too many innocent kids with extremely bright futures are becoming angels...
Live. Laugh. Love. Dream. Hope. Believe.
SO INCREDIBLY PROUD to be,
"Andrew's Sister"