Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place on Lila's Leukemia treatment, she is 8 years old . We appreciate your support and words of prayer, hope and encouragement.
Tue Feb 26 - I brought Lila into the Andover Clinic for a checkup. We had been noticing fatigue and low energy in Jan. When we went to FL from Jan 30-Feb 17 the fatigue got worse quickly. She started falling asleep about 3 or 4 in the afternoon. I couldn't wake her up for dinner, she would sleep until the next morning. She started having night sweats. She wasn't playing with the kids in the pool or hot tub and it was 70-80 degrees out! She also had no appetite, she wouldn't even eat ice cream or chips and everyone knows how Lila loves her snacks! She was losing weight. She started complaining of arm pain and foot pain the last few days. So her doc listened to me explain what was going on, I was guessing maybe Mono because of the fatigue. The doc scheduled blood work. They ran Mono, Strep and those came back negative but her blood showed she was extremely anemic. The doc said if your hemoglobin was lower then 7 they recommend a blood transfusion. Her number was 6.9. The doctor gave us iron and decided to run more labs like Lyme's Disease, Celiac's and more that I can't remember. She said I'll call you Wed and go over the lab work.
Wed Feb 27 - The doc called me in the morning and said her ferritin levels(stored iron) were extremely high 851 so stop the iron. She said she was putting in a call to a hematologist and would get back to me. Within the hour she calls me back and said we have referred you to the University of Minnesota Masonic Children's Hospital. She said she talked with the hematologist and they said her blood was making abnormal blood cells. She said they would call me for an appointment immediately. I called Eric at work crying, telling him something wasn't right.
Thur Feb 28 - Eric took the day off and we brought Lila down for a noon appointment. We were thinking(hoping) maybe she has a rare anemia or some viral infection and not letting our minds wander to the big C word. We meet the doctor(hematologist/oncologist) who ran her blood work right away. Then we came back into the room and waited maybe 15 minutes. Then 2 doctors came into the room and sat down in front of us. They said we are sorry to tell you Lila has Leukemia. I started sobing, Eric is crying, Lila starts crying and then the doctors are tearing up. It was such a shock it didn't feel real, we were in a nightmare. So they told us Lila's white blood cells were abnormal and with her body making so many Leukemia cells her good blood cells were really low which is why she was so anemic and tired. They told us they were admitting her and that we wouldn't be going home for the next week. Her blood count was 6.1, they moved us down the hall for a blood transfusion right away. She did a great job getting her IV, but it wasn't placed right and had to be moved to the other arm so she was mad. She perked up right after her blood transfusion. She loved her room, they gave her a teddy bear and she thought this was a 'fun' experience. It was also Eric's 40th birthday so we had family bring the kids and his presents to the hospital room so we could do his 'party'. That made Lila happy. She told Eric it was a fun day because we got to spend it together...
Fri March 1 - We are suffering from shock, information overload and no food/sleep at this point. We find out in the morning that Lila has B-Cell ALL (Acute Lymphoblastic Leukemia). They are telling us she's scheduled for a bone marrow biopsy, spinal tap, injecting chemo in the spine and putting in a port at noon. While she was in surgury we met with a social worker who is assigned to all child oncology patients. She said she will be our good friend for years to come. She will help us with insurance, if money were tight and can't make a house payment, if Lila needs counseling, anything at all that comes up and she'll help us. I told her we haven't even thought of any of that yet. She said no worries, when it's the time to think about it she will be there. Lila's procedure's went well. She's been so strong and brave. The doctor's and nurses just love her. Afterwards she was hungry because she couldn't eat before the surgery. She ate a whole sub from Jimmy John's. That night she got her first chemo treatment through her port. The doctors and nurses here are amazing and are trying to do everything to make this horrible situation tolerable. Lila's doctor sat with me alone for over an hour and let me talk, ask questions and cry. She was amazing! She said Lila is considered standard risk as of right now and her type of Leukemia is the best one to have as far as treatment. Treatment will be 2-3 years. I asked her 'So our lives will never be the same again', she said no. It's hard to wrap your head around, we've always had healthy kids and now we have a child with cancer. Her prognoses is in the high 90 percentile. She said they have had a lot of kids get this type of cancer and grow up to lead normal lives and have families.
Sat March 2 - I finally went home to shower and regroup in the morning. It was surreal going home after what we just experienced. I brought Matt and Ella down so we could all hang out together and talk about Lila's cancer. They have a Child Family Life helper that comes to talk to the kids, they had a lot of questions, is it contagious, will she die, will her hair fall out and how long is her treatment, and will she get better. It was good for all of us. Lila seems most upset about losing her hair. She's going to be a junior bridesmaid in Eric's sister's wedding in June. So we told her she can get a pretty wig. She keeps crying about her hair. Lila was really sore and grumpy from her procedures the day before. The novelty of the hospital wore off quickly. Eric brought the kids back home Sat night so he could shower and grab clothes. The doctors told us her spinal tap came back with zero leukemia cells so this was amazing news. Thank you God for a small win!
Sun March 3 - Lila woke up with a ton of energy. The physical therapist brought her a trike and she's been cruising the halls! They want her to keep moving her arm so her port doesn't get scar tissue around it and makes it heal faster. She's been playing with a lot of play-doh. Lila had a lot of visitor's and she loves the company and the stuffed animals and gifts. It keeps her busy and not thinking about why she's here. She went to bed early about 7 and then woke up soon after with stomach pains and nausea. She had to wait until 11pm for her anti-nausea meds and then she was able to sleep. The doctor's are saying if her fevers stay gone we might be able to go home on Tue.
I will keep updating as I'm able to. Thanks for reading Lila's story and keep her in your prayers.