Thank you to those of you who have already sent cards for the card drive. I have spoken to Heidi and Jason (Simon Says Stamp) and have an even greater understanding of how much these cards mean to the girls. Especially now. Shown below is a Caringbridge.com entry that their Mom wrote that talks about the beginning of the transplant part of the journey. I am warning you - it will break your heart. But it will also likely get you into your craft room to help them through what is going to be a long and lonely part of their lives for awhile. (I have permission to share this) Back soon with another class card.
Written Aug 14, 2012 6:31am
It's dark outside; not a sound can be heard. One last suitcase to put in the car. I step into the garage, and there I see Maddy standing in the driveway looking up at the stars and the moon. I stop and take it in. Just a silhouette against the blackness...her one last breath outside. It will be 6-9 months before she will be able to do that again...maybe even longer. All the way to Riley, she just stares outside at the sky. I ask her if she is okay, and of course, I know the answer...she says she's fine. It's 5:30am and she is wide awake. We step into the old, familiar glass elevators at Riley that we call "the wonkavators"...they just remind us of the elevator from "Willy Wonka". Then on through the first set of double doors on the fifth floor, but this time we are on the other side...stem cell/transplant. We used to joke about it on the hem/onc side where we spent the first three rounds and called it "the dark side". I turned to Maddy and said, "Welcome home"...she looks at me and smiles.
We check out our new home. I don't know how it can possibly happen, but the room is even smaller than when we were on the hem/onc side. Incredibly, though, it feels roomier...I know that doesn't really make sense, but that's how it feels. And there is no bathroom in the room, no shower either....ughhh! We're here not even 10 minutes and they already have Maddy hooked up to some leads (they're just like small square stickers attached to wires that they put on Maddy's chest to check on her vital signs). Before they get started, they show us around the floor. It's literally two hallways and takes all of one minute for the tour. There are only four patients on the floor including Maddy. Maddy takes a few minutes and escapes to the hem/onc side to say hello to her former nurses. Luckily there are double doors that connect hem/onc to stem cell. However, Maddy will only be able to visit for the next couple of days. Before her counts even drop to zero, she will be stuck in her room. She will stay there until after transplant when her counts start going up. They have to be above 500 for @3 consecutive days before she can leave her room; it may take weeks. Even then she will be limited to the stem cell floor and, she'll have to wear her mask. After a short 10 minute visit, Maddy's new nurse comes for her...it's time to get started. Immediately, they apply 12 leads to Maddy's body and they run an EKG. By 8:30am, Maddy already has 3 bags of fluids hooked up to her and her IV pole is working full time. Her chemo has begun. Sacrifices....like I've said, there are many.
Getting a bone marrow transplant is a big deal. The high dose chemo is used to wipe out Maddy's entire immune system...all her white blood cells, red blood cells, and platelets. This chemo is different than what she was getting before. The chemo she got in her first three rounds were pretty intense. AML's just have a very harsh regimen because the disease is so aggressive. However, as strong as the chemo was in the first three rounds, the high dose chemo Maddy is getting now is even a step above. This time around she will get the mouth sores, and those sores may run down to her throat and to her stomach...they call it mucositis. She won't be able to eat so she will get the "food bag" through her IV; they also say she may not even be able to talk or even rinse out her mouth because it is so painful...sacrifices.
From the moment Maddy stepped into Riley this morning, she will be in isolation for the next 6-9 months. That means no visitors. She can only have a handful of visitors which we have already chosen, and they can't even come at the same time. These same visitors will extend to Maddy's time at home once she is discharged. No big family get-togethers, no parties, no cousins or big group of friends to hang out with. That means Maddy's birthday (Nov 11th), Thanksgiving, my Mom's one year anniversary of her death, Christmas and New Year's Eve will all be spent in our home with just the four of us (and probably my Dad)...sacrifices.
She cannot go outside or even sit outside. She cannot have any outside food, no fast food, no restaurant food for 6-9 months. Guess who gets to play chef?....sacrifices.
Maddy is in eighth grade now but will never set foot in her school this year. She is set up with homebound right now and will continue that throughout the whole school year. No school parties, no football games or basketball games, no playing sports. The next time she walks into a school building will be in high school....sacrifices.
She cannot go to anyone's house, cannot go to the store, mall or movie theater, and cannot even go to church....sacrifices.
She cannot take a vacation. By the time she is allowed to go on vacation, two and a half years will have gone by since her last vacation back in June of 2011. No swimming, no boating, no lake...sacrifices.
She will have countless blood and platelet transfusions, countless pills and pain meds, and days or weeks of fatigue, nausea and pain. And once she's home, she'll be travelling back to Riley clinic three times a week. Maddy's recovery time is a full year...sacrifices.
But on Monday, Maddy will receive a gift from her sister that will change her life forever. A gift that will make all the sacrifices worth it. The girls will be connected to each other in a very unique way because Melanie will give up a part of herself for her sister...sacrifices...and rewards.