Nurses Kiley and Michele start Lolo's first cycles of chemo

Nurses Kiley and Michele start Lolo’s first cycles of chemo

Today is Day 8 of the last cycle of Lauren’s treatment. We went in last Tuesday to start chemo. I haven’t written for many reasons. The first was because I don’t have my laptop anymore, but I could have found ways to let people know how Lolo was doing. But, as each day got tougher, I just ran out of energy. I also ran out the courage to blog. I know it sounds weird that I say courage. However, I am so tired of telling everyone how hard this is. I know no matter how descriptive or how truthful I am, it won’t compare to the reality. The week of chemo is already over. I am taking deep breath of relief, because she had no organ failure, as far as we know from this last round of chemo. She finished on Saturday. When Dr. Lettieri told her she should celebrate since she just had her last chemo ever, Lauren made a face. Later she told me, “Sure it is.” She doesn’t believe them. I guess that is what was said last time she made it through all of those months. It makes sense she isn’t trustful. I don’t know how to change that.

Because of the chicken pox scare, Lauren had to finish her 30 days in isolation at the hospital once we checked in. I have to admit, I was mad as a hornet. I was so angry I couldn’t stand it, but I had no options but to check her in. The reason I was so mad is that her being in isolation limits her chances to get up and move her body and walk. Not being able to leave your room at all from Tuesday through Friday night at midnight is hard enough, especially after you barely left the house when you were home for a break. Not being able to move also puts her at risk. The less she moves, the greater the chance of her not doing well. In addition, since the hospital was out of negative airflow rooms, they had to make a makeshift one. Lauren was placed in a room that had a machine that created negative airflow. Unfortunately, it sounded like a really loud rattlely air conditioner. I couldn’t stand it at first. The first night I didn’t sleep at all. Finally, the next night, I was so exhausted I crashed. But, the constant noise was stressful. I think it made Lauren completely shut down.

Usually, the first few days of chemo, she doesn’t feel too bad and it is our chance to get her out and about some before her counts drop to zero. This time once the chemo started, she got sick right away. She had constant nausea, she didn’t eat, and she had horrible bone and muscle pain. Most of the pain was in her back and hips. She felt so bad, I didn’t leave her. Today is the first day I have left to be at home during the day. Phil is up at the hospital with her for a few hours today. On Friday, she woke up really early gasping. She yelled for me and told me she felt that something was crushing her chest and couldn’t move. The pain was a “9.” We called for the nurses. The called the residents. They put her on a heart monitor and had to rule out that she was having a heart attack. I couldn’t breathe for the next 4 hours. She was in so much pain and I was scared. Before she checked back in, we received news that her echocardiogram showed that the last 2 cycles of chemo had decreased her shortening fraction of her heart by 8%. She was now sitting on the border of normal and that was a huge concern since the last chemo regimen involved one chemo called mitoxantrone. Mitoxantrone can be cardiotoxic. In fact, it isn’t that rare that this drug causes problems with the heart. But, Dr Coulter said we needed to put her on an aggressive treatment to keep her from having to go to transplant. We had to take the risk. That made me sick to my stomach to think we had to take that kind of risk with Lauren. I am more determined than ever to raise money to find better treatments that don’t cause so much damage to these children. At the time I couldn’t write about all of that. I was just too sad.

On Friday night, Jonathan got home from Outward Bound, but we didn’t get to see him until Saturday morning. At midnight on Friday night, Lolo’s friend Catherine came up at midnight and helped her walk out of the room. Isolation was over. She took a lap and moved next door to Room 613. Her counts were going to be dropping, so once isolation was over, the moved her to a positive airflow room. Phil and I moved out of Room 612 and into Room 613 at midnight. He and Catherine went home and Lolo and I crashed! We were so glad to see Jonathan the next morning. I hadn’t seen him since June 9th when he left for his Outward Bound trip. He had such a great time. He told Lauren all kinds of stories about wolves, climbing, new friends, and hovering on the side of the mountain in a tent while it hailed. He loved the Sangre de Cristos in Colorado. His hair was long and had a wave, he was tan, and smiling from ear to ear. It was nice to have him home. He made his sister’s whole day. To encourage Lolo to get up out of her bed, we moved the hospital recliner out of her room and bought a Papasan with a furry cushy cover for her to curl up in. Lo loves it and has spent many days curled up like a little puppy in her chair.

Today, her counts are just hovering around 0. By tomorrow, I assume they will bottom out. She had a blood transfusion on Monday because she is very anemic. This helped perk her up some. However, now the chemo has ripped her insides out. Her tummy pain is non-stop and she isn’t eating well again. There isn’t much to do for her but give her hot packs and try to distract her. The pain makes her nauseous, so they treat the nausea. We are holding off most pain meds because we don’t want her intestines affected by the pain meds. She is miserable. Today I took a break from the room and it made me feel guilty. I will go back in an hour. It is the worst feeling to see her child in awful pain and not be able to help. The chemo strips the intestines of its usual mucosa (lining) and makes it hurt really bad. She was ok the first couple of cycles with abdominal pain; if it goes on longer, it is a big concern. I hope it lets up for her.

For the next 2 weeks she will be neutropenic, so we pray that she does not get any infections. She will have less visitors, but the biggest risk is from her own normal bacteria, or the bacteria usually found on her skin, in her mouth, and in her gut. She is very vulnerable right now to sepsis and from getting an infection in her central line. If she could just get through the next 2 weeks, her white blood cells can come back and she can recover. We also pray that her bone marrow can recover. There is always risk that the chemo will knock the bone marrow out and it won’t come back. After all the chemo she has had, the risk gets greater and greater. Please, God, just get her though this last cycle without some life threatening illness and make this leukemia go away once and for all!!

These were all the things I just didn’t want to talk about anymore. But, I am trying to tell the truth about what it is like for a family, and especially a child with cancer. The things I did want to write about were the good. The Olympic Swim Trials were held in Omaha over the week of the 4th. We love swimming! We went to the trials the first year it came to Omaha in 2008. We weren’t able to in 2012. The Superheroes of Swimming come through Omaha and it is pretty cool to get to see their talent. Lolo (& Jonathan) swam for Field Club of Omaha. Both since they were in kindergarten. Last summer was the first summer Lolo didn’t swim. Jonathan quit around the same time in 8th grade. I was sad! I grew up swimming on a swimteam and always loved the sport. Both of the kids were really good swimmers, they just find it to be their passion. We still like to support the trials. We were excited to hear that Lolo’s former coach, Will Raynor was to be in the trials again. Will and his siblings, Grace & Fiona, swam and coached at Field Club. Their dad is also the surgeon that placed Lolo’s central line and has done a few surgeries on Lolo. We put out word that we would really enjoy a visit or autographs from some swimmers. Lo was hoping Ryan Lochte would swim on over, but I think the guy is a bit popular. I know a lot of nurses that would have been very happy, though. Instead, we got a call from Mutual of Omaha (bigtime supporters of the trials and USA swimming) that some swimmers would like to meet Lolo.

Josh Davis, Ian Crocker, Christine Magnuson, Kristy Kowal, Lolo, Kiley Root.

Josh Davis, Ian Crocker, Christine Magnuson, Kristy Kowal, Lolo, Kiley Root.

On Sunday morning, we were surprised by Ian Crocker, Christine Magnuson, Kristy Kowal, and Josh Davis. All of them medalists….all of them legends in the sport. Lolo’s friend, Kiley, come over to meet them with Lauren. They were kind as can be. They showed the girls their medals and told them stories about each of their Olympics. Christine’s medal had jade in the back of it from the Beijing Olympics. We thought it was funny how they commented about the outfits from their opening ceremonies. It was really neat to see how well they got along and how the former Olympians come and support newer swimmers. Most of them work to run clinics and advocate for swimming around the country. Lolo was quite enamored with all of them. We are big fans! What a wonderful morning. It definitely gave her a boost for the many weeks ahead! We are ready to face them, but it is getting harder not easier.

 

 

Lauren's classmates walking in the Fourth of July JE George parade with the Go Lolo Banner.

Lauren’s classmates walking in the Fourth of July JE George parade with the Go Lolo Banner.

I was so touched that a bunch of her classmates walked in the JE George parade on the 4th and held a banner that said, “Go, Lolo, Go.” Then, Catherine, Kate, Emma, Caroline & Lauren B came up to give her some company for a while. She enjoyed seeing them very much. It helped the 4th not feel like such a bummer. Later, Sara Wachter brought us up a mini picnic and we watched the fireworks from the view of Children’s. Because it is a round building, our view of the city was phenomenal. We had about 180 degrees of the city in sight. The skyline was full of firework shows. Jonathan and Phil stopped up, but Lolo was having too much pain, so they left. She had a really hard night last night. I hope she doesn’t have too many of them coming up.

Ian Crocker wrote on his twitter that he met a lot of strong people at the trials, but no one as strong as Lolo. He is right. I just wish she didn’t have to be. Watching Lauren fight this fight, you realize that she is having to endure what Superman himself couldn’t do. She is enduring what most Olympic athletes couldn’t. I didn’t write this week because my courage is waning and I am getting weary. I usually rally Lolo on. I try to make her fight. I come up with the positive. I bring her washcloths and drinks or anything else she wants. I try to find good food and coordinate her friends. None of it is enough or even that much of an effort. I would do anything for her, or for Jonathan too. I feel desperate lately. I am begging God to make her better. I am begging people to help her and cheer her on. You would too if you saw her sweet little face with big tears rolling down it from the pain or her pale face and dark circles under her eyes. It is enough to rip your heart out. I can’t stand it much more. Please, help, us find better medicine and cures for childhood cancer. Please, God, have mercy on these children. She isn’t Superman. She is just a young girl that wants to be with her friends just like everyone else.