Today is the last day of chemotherapy for Ella. Even though this is her last day of chemo this is not the end of her journey, it is the beginning. This experience will help to shape and mold her into an incredible person and I can not wait to see what a child with this kind of strength, courage and heart will do to make a difference in this world.
Steve and I attend a couples group. The group of people makes up part of our wonderful support system. We are an "unofficial" group- not through our church because we wanted to have a social aspect to our group. Translation...we like to drink alcoholic beverages and eat while we converse about God. I favor the Red Wine, but I don't judge those who prefer beer :-) Okay, inside joke with my hubby who just started drinking beer.
Anyway, I didn't feel up to going tonight. It has been a rough week here at the Van Gheem's. With only a few days left of chemo, Ella spiked a fever that got to 103.3 at 12:30am on Wednesday morning. The Dr. sent her right to admitting to get checked into the hospital. Do not pass GO and do not collect $200 dollars!
So Ella and I went to Loyola while Steve stayed home with Josh. By 3:30am they had pulled her counts and given her Tylenol to break her fever. We cuddled in the little twin bed and got some sleep. Turns out she tested positive for the common cold. The good thing was that her counts were high enough so we were released Wednesday night and sleeping in our own beds that night. By that time her fever was gone and she was bouncing around like she was never sick. The only bad thing is that this is when I realized, I was sick.
There was a positive thing about Ella being admitted. I spent some time with Dr.M, Ella's other oncologist. When she was diagnosed and then a month later determined a Rapid Responder with good Citogenetics, we were told her recover rate without relapse went from 87 to 92%. These are great numbers for any illness, but things change and since her diagnoses over 2 years ago, those numbers have now grown to 95%. What Steve and I did not realize is that that INCLUDES Ella! I thought that only the kids on the newest protocol have that 95% w/o relapse. When he told me I started to cry. He was like "Oh, you knew that!". And I believe I said something like "Does it look, sob sob, like I knew that?" Anyway- Happy Tears to think there is even a 3% less chance of the nasty relapse word. He also yelled at me for speaking that word. Then he told me God is good, which He is. Only 3 days of Chemo left!
So, now I am trying to get healthy and keep Ella healthy so she can PARTY and CELEBRATE on Sunday! Her biggest concern about being admitted was having to cancel her party with her friends. She found out about the limo, but it was a hard secret to keep. Plus seeing how excited about it she is, makes it all okay.
Thursday morning Kailee, our dog, started barking at us. Kind of a crying bark. Then at about 3pm she went upstairs, laid in her bed, and didn't come back down. She just laid there with her leg way up close to her body. Steve and I made the decision to put her down today. We took Josh out of school so he could say goodbye, then Steve and I took her in. The kids cried, we cried. It was a really rough day. Even when we were in the vets office Kailee was wagging her tail and I couldn't help but think "Maybe she isn't ready yet?", "Are we making the right decision?". Steve's response was this- that we were blessed. Blessed to have Kailee as part of our lives and blessed with the burden of having to make this decision. There is a hole in my heart that will shrink over time, but still a hole nonetheless. She's family, and I was blessed to have her as part of my life for the past 10 years. Love you Kailee Girl.
Please forgive the lateness of this post. I have been writing it for days, but this one was tough. I kept re-reading what I was writing and it just made me cry. So, I took a few days to help put some distance between this day and writing. Thanks for your patience everyone!
She did it. She had her last chemo at clinic this past Tuesday. We woke up to a decorated van and drove that thing loaded with people to Ella's last clinic with chemo. We all wore our "Kick Cancer's Butt" bracelets and took this picture before Ella went into clinic. Josh even asked to come so he could celebrate too. It was girls only for the back room where she got accessed. She kept saying all morning "Liddy Grumpy!" She calls herself Liddy, which somehow stemmed from Little Ella to just Liddy, and she was mad because she couldn't eat. She had her final spinal chemo today, and while she was recovering from that she had her final Vincristine drip into her port.
Getting Ready for the Spinal Chemo#1
Everyone was really happy for her and when she was all done the nurses gave a grumpy Ella a big hug.
Ella's Nurse hug- Ella, Annette, Sue and Megan in the back.
I love these 3 ladies, but one of them was missing and she is Ella's favorite nurse- Mrs. Theresa. This was the first nurse to access Ella so she became the one Ella always requested. When we first met Theresa, it was our first day of clinic. It was a Friday and Ella and I were the only patients. I spent some time talking with Theresa and getting some perspective of what this journey was like from a more experienced prospective. Through the knowledgeable eyes of someone who has walked this journey and seen the joy and the pain.
Mrs. Annette, she has this laugh that you can hear all through the back clinic room. This is the room where the chemo is dispersed. Listening to her and the other nurses laugh at the little things makes you forget why you are there. She always calls Ella "Princess Ella!"
Mrs. Sue. She has such a heart. When I first met her, I overheard her talking to another patient about his game that she went to see. I think it was hockey. The cool part was that she went on her own personal time to take part in this child's life. I'm grateful for the skill and care they have taken with my daughter over the past 794 days.
Build A Bear
So we are done with clinic chemo and days away from finishing chemo at home. Now what? I knew how to be the mom of 2 happy kids. Then, I learned how to be the mom of a cancer kid. Now, I have to figure out how to be the mom of a kid who had cancer and pray that I never have to learn to be the mom of the kid who has cancer again. There are so many unknowns about the next 5 years. Ella will continue to go to clinic monthly for now to make sure she hasn't relapsed. The next 2 years hold the biggest percentage of chance she will relapse, but they monitor her for the next 5. I think 5 years is the magic number for most cancer patients. Steve and I spent most of Tuesday night with a glass of wine and lots of tears (okay I was the teary one!) trying to wrap our brains around what the next year will look like for us.
I don't know what kind of mom I will need to be, but I do know that I will be the best mom that I know how to be. I will do my best to learn from others that are a shining example of love to their kids. I will apologize when I make a mistake and ask their forgiveness. I will remember that I am their mother and not their friend and sometimes that isn't fun. I will remember to share God's love with them. I will remember that everyday they are watching how I treat my family, friends and strangers and learning from my actions. I will remember to tell them they are strong, beautiful and worthy of great love. I will remember that I can't control their lives, but only lovingly guide them towards a positive direction. When I feel like I've lost control and can't do this, I will try to remember that God made me Josh and Ella's mom for a reason, and he doesn't make mistakes. I couldn't be prouder of Ella and Josh and the love they have for each other and the strength of our entire family through this journey.
My cup runneth over.
I will post pics of Ella's last day of chemo party next week. I'm sure I'll be crying through that post too, so bear with me!
For Steve and I, our first "baby" was our Chocolate Lab Kailee. We had just purchased our first house in June of 2002, we were about to get married and we wanted to get a dog. The problem was I wanted a big dog, and Steve wanted a small dog. We went back and forth for months. Neither of us wanting to cave in on our stance, and also neither of us were good at making decisions that required the other to not be completely happy.
A co-worker and I had been in training together in Ohio when his first litter of labs was born. His wife email him pictures as the litter was born, and we spent a good hour stealing looks at the photos and waiting anxiously for the next one to come. I really started pushing for a lab after that trip, but no decisions were made. Then in late June, I got a call from a co-worker in Iowa. One of the puppies that had been paid for was not picked up. Only one half of the couple wanted a big dog, and they could not come to an agreement. He asked if we would like the puppy as a wedding gift. Well, a free big dog, was better that a little dog that we have to pay for, so we took the beautiful little brown gift!
We picked up Kailee on the 4th of July. Steve still was a little leery about the size of a lab. We met with my co-worker and his family at my office. When we got there they were outside playing with the puppy. We came prepared with our new collar and leash, said thank you for the beautiful gift and got in the car. I had Steve in the back seat with the puppy and I drove. Within 5 minutes and that little Chocolate Labrador was sound asleep in a ball on Steve's lap. I can still recall the smile on his face when I looked in the rear view mirror. I knew that smile well, he was in love.
She is a car dog. She has been on several road trips to Florida, camping trips and out for a day of errands. She loves to sit at the front door and announce when we have guests. She will immediately push her head between their legs and demand they scratch her butt. She is semi-trained. She will come when you call her if she doesn't see anything better outside and she knows the boundaries of her yard. I know that if she ever strays, it won't be far because she would miss her daddy too much.
We found out last month that our sweet Kailee girl has cancer in her rear leg. I took her to the vet because she had been limping on it off and on for a few months. It seemed to have gotten better, but suddenly she was limping and nothing was helping. Steve and I discussed that cancer was an option the night before. The vet had hinted at it during her last visit, but when it seemingly healed we thought we were safe. We both held her and cried. My tears were licked away by our girl. Ella and Josh were with me at the vet. I held it together as I sent them out of the room, I knew by the vet's look it wasn't good news. I made it home, sent the kids out to play, snuggled up with Kailee and let the tears flow.
We told Ella and Josh that Kailee has a "Disease" in her leg that is breaking her bone apart, but we will not tell them it is cancer yet. We do not want Ella or Josh to relate Kailee's disease to Ella's or anyone's cancer. Mostly because I'm sure they will ask questions that I just don't know how to answer yet.
I am so sick of the word cancer. My daughter, my best friend, my dad, and now my dog? Really? How does anyone take this in, digest it, comprehend it? How do you wrap your brain around this much suffering when you feel so helpless? So, I freaked out for a little bit, cried, then sucked it up, put my faith in God and moved forward- because that is all you can do. I know there is a plan that I am not privy to. A reason and an understanding of these events that, at this time, is beyond what I can understand. They call it faith for a reason. There isn't anything I can Google that spells out to me why things have happened this way, and I know it's not about me. I may be a small part in how these things play out and how they impact others, but that is it.
I often wonder what God's plan is for me. How I'm suppose to make an impact on this world and make decisions that honor God, my husband, my family and my friends. I think you don't understand God's plan until your in it or it has happened. In other words, hind sight is 20/20. Often I look back and think, I shouldn't have passed up an opportunity to help someone or act differently, but it is not until I look back that I realize what God might have had in store for me, or that me missing that opportunity sets me up perfectly for the one that God really wants me to be present for. Somehow this all plays a part in his plan and I know one day I will be able to look back and see clearly what eludes me right now.
Our sweet Kailee Girl is hanging in there. She has good days and bad. When I get the chance I snuggle up in her dog bed with her and let her lick my face with reckless abandon (this totally grosses me out, but her tail thumping on the ground tells me it is bringing her joy). She gets to eat pretty much anything she wants now, and her strict diet is gone. The kids made a paw print stepping stone for her and put 'Best Dog Ever" on it. The vet told us she had at most four months, but I know he is not the one that decides that. Whenever that doorbell rings, she limps over to the door and wags her tail like a 6 month old puppy. She is so much a part of our family, I still can't imagine what our home will be like without her and honestly, I don't want to. She will always be our first baby.
This commercial came on the other day and I made Steve wake up and watch it with me.