I have been up for the last couple hours trying to research a few things online. Jonathan was up too and got a snack and went to bed. Lauren couldn’t sleep so I rubbed her back for while. It would seem like the adjustment home would be absolute bliss. There is no doubt we are so happy to be back in our home. But, it isn’t that simple. We have had the wind knocked out of us. We haven’t even had a chance to regroup since we found out back in March that Lauren’s cancer was back. We put up our dukes and started fighting. Now, I am wondering what in the hell hit us and how do we get back on our feet.

The transition home begins as bliss, then extreme fear sets in. Lolo’s temp has been bouncing around some. So, I am on guard that she is going to get sick before her immunity comes back. She is still critical for her ANC. We will be in clinic tomorrow to get her counts done. She is very lethargic. She isn’t up very much at all yet, which is normal. She is eating a little bit more, which is good. She still can’t sleep during normal hours. She slept good in the afternoon yesterday, but stays up most of the night. I wonder what she is thinking. I know I can’t sleep very well either.

We have spent our evenings watching the conventions for political office. I have been excited about some of the words said and start becoming hopeful for our country, our family, our community, and then I remember no one has addressed the big elephant in the room for me. I feel overwhelmed with grief for what Lauren has been through. Rebuilding her strength and starting all over getting her back on her feet feels daunting. Recovering the financial costs of all of this to our family seems daunting. Rebuilding even the family dynamics again after over three months of being separated is rocky. Jonathan and Phil built their bachelor pad and helped support Lolo and I at the hospital. But, as you can imagine, having the queen bee back in the hive is a bit unsettling. Jonathan was kind of digging the man vibe floating around and is beyond disturbed the standards of having to do chores and eat at the kitchen table are coming back around again. He admits, he likes having Lolo home, but me, not so much. I am trying not to take it too personally and know that is pretty common for a 17 year old boy. But, the thing that seems the most daunting is to focus on the routine days. It is hard for me to get my head around going back to work in a couple of weeks and focusing on school clothes and homework. We still haven’t solved our biggest problem.

What do we do in the face of the true existence of a kid with AML-Monoblastic, Aleukemia Leukemia cutis. What that means is that the best Lolo’s doctors can say is that they “hope” the intense chemotherapy has killed that frackin leukemic stem cell that caused the leukemia to spread to her skin. They hope it is gone, but they don’t know. In fact, they don’t really know if the chemotherapy was the right treatment. This isn’t because they aren’t too bright. Dr. C is the brightest bulb for sure. It is because Lolo’s case baffles people. She has beat some great odds, that is for sure. But, she also has the most aggressive bugger of a leukemia that is also giving us worries. Thank God she also isn’t what is called “FLT3” positive. Thank God for that. But, leukemia cutis is a bad situation. It is regarded as a liquid tumor. That leukemic stem cell is not showing up in her bone marrow aspirate, but it doesn’t mean it isn’t there. It could still be there despite the intense hit she just took. It could come back at any time. I am supposed to feel some relief that the “transplant team” is ready to go in case she needs to go to transplant. I am supposed to feel good that we are having her screened by the dermatologist now every 3 months to see if it has come back in her skin. I am supposed to feel good that we will take her every month to have her blood drawn and just make sure it isn’t there still. A lot of other cancer families think that they experience the same thing with their screens, but they don’t. When a child is done with treatment for ALL, unless they have high-risk ALL, the chance of that ALL coming back compared to AML is slim. You can’t compare the two actually. The relapse rate of AML compared to the majority of pediatric cancers is the highest. The prognosis every time there is a relapse is worse. That is why I can’t sleep. That is why I am not satisfied with the “hope” that it doesn’t come back. I can’t sleep and I am actually angry as hell. This just isn’t fair to Lauren. I want to be positive and I want so much to help other people. But, right now, I want to help Lauren. I want to find some research that helps these kids that have relapsed AML and find out how to test them easier and better for the residual leukemia. I want to find better drugs that don’t wipe them out so much and put them at risk. I want to increase their odds.

Tonight I couldn’t sleep because I noticed her hair isn’t starting to show up the way it always has in the past. I got online and started researching all the ways I could help increase the chances that this awful chemotherapy she was just on didn’t make her permanently bald. I have some ideas of things to add to her diet tomorrow. I have some other supplement ideas and questions to ask when we go to clinic to add to the list I already have.

I have already started writing letters to different researchers to find out the best studies to try and fund in the future. I am starting compose letters to the candidates, VP Biden, Governor Ricketts, our Congressman. I know there are many worries in the world right now. There is violence and poverty. It is difficult for me to ask for more compassion from people. But, I can’t just sit and let moss grow under my feet. We are barely out of the woods right now and I can’t waste any time. My sweet daughter is a miracle and I realize that every day. But, she is also my little girl and the love of my life. I desperately want to enjoy my time with my family and getting to go back to work. But, I can’t be in denial that her life is still threatened and until someone finds better solutions for AML our life hangs in the balance.

Please don’t send me offers for supplements or drinks and such. Her chemotherapy was very specific and is not similar to breast cancer or other chemos. We are working hard to manage her diet with organic foods and grass fed beef and all the recommendations that we have found worthy to help her keep her body cancer free. Please help by donating to Lolo’s Angels so that we can find research to help her and other kids with AML. Please help us bring awareness to our politicians that there are kids that are suffering in our own country and need immediate attention. Thank God Phil and I have good health care. The last bill from the pharmacy for her chemo was $186,000.00. That was just one of the bills, not to mention 80+ days of inpatient hospital care, 3 trips to surgery, 2 PET scans, CTs, etc…..yep, you get the picture. Phil and I can be considered the Lucky Ones. We can be considered “lucky” also because we bought really expensive health insurance after he retired from the military because I was so sick of dealing with Tri-Care. We can also be considered “lucky” that it took 11 years before we had our kids and we were both working and saved and saved and saved. Lolo’s first treatment was way over 2 million dollars!!!! We paid a portion of that. I quit my job immediately and we adjusted to only having one income. I used one of my retirement accounts to pay off some of our big bills. We were “lucky” we had that money. We were also “lucky” we had saved for our kid’s college education and were able to use that to pay off our bills this time. Our nest egg is gone and so is their college fund. We worked very hard all of those years for that. I don’t worry about that. I am accepting it is part of God’s plan. We have Lolo with us and that is all that matters. But, think of all of those other families that didn’t have that. Many of those kids sit up in the hospital alone fighting cancer because their families don’t live in Omaha and they have other kids. Their parents have to work. Some don’t have insurance. Some families don’t have the resources that we have. They certainly don’t have the fight to stand up after all of the treatment is over and fight some more. They don’t feel empowered to do 5ks for cancer and fight like breast cancer survivors do. I see families that fall apart after this. When we were on 6th floor of the last couple weeks at Children’s, I saw security standing outside patient rooms two different times because of family disputes. Families…parents are wounded to the core by this experience and don’t always act sane. Families fall apart.

I know the positive, fearless, pediatric cancer fighting mom is more palatable for this blog. But, it isn’t really fair not to tell you some of the truths of this situation. We are just getting started fundraising. My passion will be strong to make a difference. It is will be strong to help my family get back on their feet and deal with the realities coming our way, including making Jonathan comfortable having mama bear back in the den. I will try so hard not to become annoying about this, but please help us. Come to our fundraisers…..they are going to be very fun, btw….just absolutely fun, I promise you that. Please, make a donation with whatever you have to AML research. I promise to find the best project out there that will help these kids with your dollars….not one cent will go into our pocket….we have all our funds going into Sammy’s Superheroes as Lolo’s Angels Research for AML. But, we don’t have the luxury of time on this one. My hope is that we get a project going ASAP. We hope that Lolo’s leukemia doesn’t come back soon. We won’t know that. Her body needs to recover and it scares me to think she could have to go to transplant anytime soon after the chemo she just went through. Her organs and her whole body are wiped out. In the meantime, we are close to raising $3k just from our blog. My hope was that we would raise $10k that way. Then with our fundraising over the next few months we could add dramatically to that number. But, could you help us get to the $10k goal….$100 at a time…or even $50 or even $25 if that is what you have.

All of the speeches in the world can’t give our family back our peace. We try not to mourn the loss of our family the way we knew it at one time. On 12/12/12 when Lolo was diagnosed with leukemia our life changed dramatically. We are trying so hard to be positive and find our way back, but we just keep getting hit over and over with heartbreaking news and difficult situations.

Please keep praying for Lauren. Add a little plea that her hair grows back. Give this little girl a break and let her have something wonderful….soon!!!