Lauren had to go in today to get a Strep test. This is actually the first day she has missed since school started. She had to miss a couple of hours one day, but not a full day. She is so tired. We saw her pediatrician, not her oncologist today. It was nice to see Dr. Woodford and have a normal kid check. His nurse, Kayla, is such a doll. She was there the first day that we found out Lolo had leukemia and I think it has haunted her ever since. She worries about Lolo. She said she was so concerned because I hadn’t updated, so I realized I had better.
Lauren finished radiation to her leg a week ago. Her leg has a big red round sunburn around it. Her leg gets sore, but it is healing very nicely. She is less fatigued than she was the first week of school, but the addition of homework at night is exhausting for Lauren. I am exhausted also being back at work. I notice that most of the kids have that look that the grind of school is starting to take on kids. Last week, Lo had a little red rash on her thighs and we had to get her checked at the dermatologist, plus she had her routine Hematology/Oncology appointment. The night before the dermatology appointment for the rash, I panicked. I didn’t sleep all night. The fear that the rash was “leukemia cutis” returning to her leg kept me awake all night. I was so tired teaching the next morning. Phil took Lauren in and the dermatologist said she was just having some skin irritation and it was definitely NOT leukemia cutis. Dr. Coulter looked at it later that day and we got her bloodwork back. He confirmed it. I realized I had been so uptight since the night before. I have been uptight since last March when we found out her leukemia was back. I have just plowed through without giving in to my fears. Since she has been out of the hospital we have had nothing but one transition after another and I haven’t had time to process what we all just went through. We haven’t had time. Since last March we have been by Lauren’s side fighting with her, hanging on to each day. It is hard to feel like it is really over. When we had the scare last week, all my emotions finally rushed in and my fears came to the surface. Somehow in the back of my mind I admitted to myself that I am afraid we will never have a normal life again and Lauren will never be done fighting this beast. I am so tired of it. I am so angry that I can’t find some guarantee that this horrible leukemia will ever go away. I am furious that she can’t be carefree and worry about things like homecoming and volleyball. No matter how had I try to handle this with grace and try to be tough, knowing that falling apart or giving up isn’t going to change the outcome, I can’t lie to myself or anyone. This is beyond my ability. If I believed in karma, it would make sense that in my past, I have done a lot of wrong. Or, even if that was true, why would my child have to suffer like this?
Lauren is brave. She wants this to all be over, so she pushes forward. She tries so dang hard to overcome all her obstacles. She does it all with a smirk and a very sassy ornery attitude. As much as I want to get in there and fight for her, she doesn’t want me to; so I honor her and give her space. That is hard for me, but gives me a bit of a relief. It means she has her own fight inside of her and she has confidence that she can handle things herself. I worry so much that she has been given too much to handle and I don’t always know how to navigate when to help and when to back off. The only thing that helps me cope is putting my energy into trying to raise money for research, but even that has been way too much for me lately. I am desperate. I wanted to start our non-profit after she fought leukemia the first time. But, her first time fighting about knocked our family for a loop. The last few years I have been fighting my own battle to get us back on our feet as a family and help Lauren regain her cognitive abilities and stay healthy. Her 8th grade year I was starting to feel like she had finally regained all her strength. It seemed she was also starting to do better in school. I thought I had time. I was worried the leukemia was coming back, because the kind that it is, I knew it had a high chance of returning. But, I secretly thought she was a miracle and would beat the odds. Now I am mad at myself that I didn’t do more over the last three years to get research going then. Now, I know I don’t have time to waste and we don’t have the luxury of time.
We started our non-profit to finally try to even the playing field for kids with pediatric AML. However, launching a non-profit is harder than hell. It hasn’t gone so smoothly. I have had amazing people step in. We have decided to partner with Sammy’s Superheroes. But, figuring all of this out and finding out who can help in what way has left me overwhelmed and afraid. Can I handle this right now? I just went back to work, so I was giving myself a few weeks to learn a new job, a new school, and get used to wearing something other than my slippers and yoga pants. My body hurt after Lauren got out of the hospital. Her muscles had atrophied so much after being in bed from April through July, but so did mine. My feet actually hurt from wearing normal shoes again. Lauren keeps getting blisters on hers. The things I am waiting to happen for our non-profit have me in a panic. We just found a development person, but she had to resign before she was able to get started. We desperately need underwriting money to print out our official letterhead. As I started school, we were waiting for that and now we are so late getting thank you notes to people that have donated. I am worried that I am trying to get this going, but it is 3 steps forward and 4 steps back. Just as I think I should give up I remember that without this research, kids like Lauren, or even Lauren herself may not have a chance, if we don’t find better ways to treat pediatric AML. I hope people are patient with us as we form this non-profit. It is a true grass roots movement full of volunteers doing this for the first time. What gives me the most hope is our Jr Board of Directors made up of high school students from 4 different high schools. If their enthusiasm and energy rubs off, nothing can stop us.
Some days I wish all of this could slow down. I wish I could just spend time with my family. I wish I could take these school days and time with Lauren and Jonathan all in without any hectic days. I feel torn between enjoying our peace and fighting like hell against AML. This is certainly not the life I would have chosen….all of the cancer part that is. The direction that we are taking now doesn’t really feel much like a choice either. It is a calling. You could say it is a call to water. It does take me shaking off the fear and trusting. It is humbling me at every turn. I feel like being called means I have to have more courage and endurance. As worn out as I feel, if I don’t fight for these kids, who will? As exhausted as I am, how tired are these poor children after having their bodies brutalized by this harsh treatment? As intimidated as I am about being so public about my mission, who is going to give a voice to all the kids dying and suffering from AML? I want to curl up in a ball some days and just sleep for days on end. I know Lauren does too. I wish she had at least 2 more months of recovery before school had to start. It seems like way too much for her. So, if she can do it, I can. But, please be patient with us. None of your help or efforts has gone unnoticed. Anyone that has helped us, If we haven’t thanked you properly, please know, I haven’t really done much properly in a while, but I am grateful. I am so thankful for all of you. We are kind of holding it all together by threads. Don’t give up on us either. Don’t feel your money or your volunteer time is not going to amount to anything. I won’t give up and inch by inch, we will get closer to making a difference for kids with pediatric AML. Please also don’t get exhausted from us asking for help for AML. It is long overdue and it truly is a matter of life and death. Lauren has fought with all she has. We need to make sure that if her AML comes back again, she at least has a humane treatment option and a chance. We need to make sure that kids that get diagnosed with pediatric AML see some improvement in their chances of survival. We just have to. So much of Lolo’s childhood has been stolen from her. I know everyone looks at her and thinks she has handled all of this so well. But, do you really think any kid can? Do you really think she should have had to?