Our family had a nice Easter, however, it was a big change without Jonathan. I made his favorite homemade macaroni and cheese in his honor, but the table wasn’t the same without his humor and his great appetite. We had a nice Easter with Nanny and Aunt Alesia. Lauren had a relaxing Easter Sunday, but had a hard week before that. I am emotionally flat and tired, more so than usual. About a week ago, Lolo went in for an MRI because she has had increasing pain in her leg. This is the leg where she had surgery and radiation. The pain she has had started around the end of February. It was getting worse and pain meds weren’t helping. Lolo got to where she didn’t want to do much since just walking on it during the school days made it hurt. The MRI brought some scary news. They found another mass in her leg. It was about 7 mm in circumference. Her relapsed leukemia was in the form of a “chloroma” or leukemia in the skin and was 9 mm. The MRI could not tell what kind of mass this was, but it had an irregular border, so we were nervous. We were waiting to see Dr. Coulter about it to find out what to do next. But, before we could see him, Lolo’s leg started turning purple while she was at school. She couldn’t bear the pain. I took her straight to the ER. They ruled out a blood clot, but we still didn’t know what the pain was from. We were referred to Dr. Raynor, our friend and the surgeon that took out the original mass from Lolo’s leg before she had to go back into the hospital this time 2 years ago. Dr. Raynor read the MRI and measured Lolo’s leg. After an examination, he thought that the pain was from a nerve trapped in some scar tissue. He thought the mass was this scar tissue. His answer to this was to give Lolo 4 injections in her leg and block the nerve from firing. This was very painful for Lolo, but it worked. Her leg was numb all day. Dr. Coulter put her back on Neurontin to get her nerves settled down. We still don’t know for sure if the mass seen is anything to worry about, but for now we will assume it is scar tissue and check it again in June.
As usual, Lo has not missed a beat since having the nerve block done. She is back planning Field Day and activities for spring. She stopped working with her trainer and didn’t finish tennis tryouts because of all the pain she was having. She is still having some trouble recovering this time. But, she is determined to get back working with our buddy, Brent, and get her back in Lolo shape. She and I are going on a school trip to Europe this summer and we will need to be ready to walk a lot. I think with spring coming and some nicer weather, this will help motivate Lo to get out and be active. It seems like we are starting over quite a bit, but that is how this goes. I am on a site online called Momcology for AML moms. It is a long, hard journey to recover. It is certainly not for the faint of heart. I have to watch my attitude and my energy because how can I expect Lo to do well with all of this if I can’t. But, the recovery is 18 months out and I think she is getting frustrated. I think we both forget how far she has come. She has missed over 20 days of school this year, so keeping up is very difficult, but she doesn’t have a choice. This is much better than last year. Dr. Coulter told her it would take 2 years to recover. That is what I am seeing. She looks completely recovered. But, she is very tired, more tired than the average tired teenager. She also aches a lot, has headaches and pains in her back and feet. We have been worn out and haven’t had the cancer to fight. I think it is time to now fight the fatigue and get in shape…..all of us. We are all worn out from this….even Jonathan all the way in Utah is worn out from the vigilance and the focus on this insidious disease that threatens to come back and destroy all that we love. More days than not lately we forget about AML, but like last week, we are humbled by this illness that seems to never go away…..for now, it has….it is scar tissue and a trapped nerve….for now we are a normal family preparing for spring.
We have a lot to look forward to. Phil and I have a big anniversary in spring and we plan to spend a nice weekend away, if all is well at our house. I am heading on a cool trip with Lolo. We plan to head out to Utah to see Jonathan. He is staying there this summer to work and get his residency status in Utah. Other than that, we are busy with Lolo’s Angels, Inc. We are currently helping a family in Omaha with a little one that has AML. He is doing so well with his treatment, but it is so hard on families…..the isolation, the fear, the financial burden, and living in the hospital for weeks on end. We are so honored to help this young family. It is sad to gain new members to our cancer family, but it sure feels fabulous helping in any way we can. We are currently trying to run bone marrow drives to find a match for little Krew. His family could also use some help with their medical bills. Please look on Facebook @ Lolo’s Angels, Inc. or our website at lolosangels.org to find out ways that you can help.
I have been appointed to an AML steering committee with the COG (Children’s Oncology Group) along with my friends Julie Guillot and Michael Copley of Target Pediatric AML and Joe McDonough of the B+ Foundation. All of these incredible people have lost a child to AML. I am the only representative of a family with a surviving child. This is the reality of pediatric AML. The current statistics of survivability are not accurate. With the relapse rate and inaccurate reporting, less than ½ of these children survive. For those that relapse, it is less than 25%. This group is trying to change this. We are committed and united to find a cure. Until then, we will settle for better treatment, communication, and better care for children after they survive cancer. This is a worthy cause.
This Easter is evident that we have many blessings. Five years ago on Easter 2013, Father Don Shane was visiting the Church of the Holy Sepulchre and was asked to offer mass. He offered this mass for Lolo as she was extremely ill at that time. Lolo had been anointed so many times. This Holy Thursday, she was asked to offer the oil of the sick at our Holy Thursday mass at St. Margaret Mary’s Church. As she stood up on the altar, I wept. It was not lost on me that 5 years ago, I didn’t imagine that she would be in remission and well. I didn’t imagine that she would fight this disease to have it return when she was in 8th grade either. But, thanks to powerful prayers, mass offerings, anointing of the sick, and the love from all of you, she is here with us. There are miracles all around us. This Easter, she is well. Hope springs eternal.
Many Blessings to All of You!!