October 25, 2017 was the day my son got his life saving bone marrow transplant. Today is his 1 year “Re-Birthday” anniversary. I should be thrilled. We should all be so very happy that he is here, and he is alive. Believe me when I tell you that I’d be heartbroken if he weren’t here with us. We are so grateful for the transplant, but we did know it could cause some complications. Lucas was FINE all year. He did so well that he got off isolation early, and surprised his doctors. He returned to school in September, and caught up a lot despite and autism diagnosis, and skipping kindergarten.
On October 7, 2018 Lucas came to me complaining about his g-tube. That’s a little port inside of his stomach that allows us to give him medication that he just refuses to take orally. The infection had gotten bad pretty quickly. I would have noticed it sooner if it weren’t for my concussion from my September 18th car accident. However, it wouldn’t have made a bit of difference. I knew I had to call The Jimmy Fund because the skin around Lucas’ g-tube was warm, hard, and tender.
From far away It just looked like he had been itching it. The crusty stuff around the center has kind of always been there. He calls those belly boogers, TMI I know but this is our life, and this is The Wicked Ugly: Nothing But The Truth. So we got a call back from the on call stem cell doctor from Boston Children’s who advised us to bring him into the ER because he also had a fever, and would likely be admitted. So my husband Mike and I took some deep breaths and did what we had to do. We packed up ourselves, our one year old baby, and Lucas. We have this packing down to a science, and we have learned how to minimize what we need to bring so we don’t fill a whole trunk. However, we hadn’t had to do this since February. That’s 8 months of medical normalcy.
I stress medical because there has always been, and there always will be his severe mental health issues. Lucas isn’t your average autistic kid, the control seeking bully type most of the time. We know it’s probably because of all that he’s been through in life that he had no control over. He was doing so well at school, and his little sister Joey was also enjoying her first year of preschool. Our family was just getting used to having a normal life. My teenage daughter, my husband, and myself enrolled at a local community college. Luke’s Dad was finally enjoying some much needed R&R as he is disabled with a neurological muscle disorder, and he’s always in pain. He also has a hernia that needs to be operated on, but who has time for surgery?
My point is, things were better. Lucas had a BCBA for 15 hours a week at home after school, and on the weekends. We were just starting to manage life a little better. Then suddenly we were in the emergency room at Boston Children’s Hospital for 10.5 hours. They had to do 8 peripheral sticks, and two guided ultrasound arterial sticks to try to get blood drawn, but he kept blowing veins, and two of his CBC tests clotted before the lab could test them. On the 8th try the lab was able to give us results. The transplant doctor came in and told us he thinks the test was an error. Lucas’ ANC and Platelets were so low that they just didn’t believe it. He ordered another test to be sure because at that point we could go home as long as his numbers were good.
An IV was finally placed the tenth time via ultrasound, and they were able to give him his antibiotics for the g-tube infection, and get the other blood test done. I can remember being so tired that I finally fell asleep on an extra stretcher with the baby. The doctor woke me up and literally said, “I’m afraid we have some bad news”. The test was right. Lucas’ white blood cells were at 2.6 (7.5 in July), Actual Neutrophil Count or ANC was 60 (4500 in July), and his Platelets were only 17 (348 in July). I absolutely could not stop myself from crying. I knew this was bad. The doctor said he had absolutely no answers, and that we were being admitted back to the 6th floor (Oncology / Hematology / Transplant).
I had decided to remain positive, and I wasn’t going to let anything break my stride. In the back of my mind, I just knew everything would be okay. There was no doubt in my mind. When they told me that Lucas needed a platelet transfusion the next day, I was a little worried. After the transfusion he crashed with a fever and blasted through those platelets. They kept saying it was likely to be viral suppression because he started getting a croup like cough his sister brought home from preschool. They did do a bone marrow biopsy during our 9 day stay, which helped us to find out that his chimerism test showed that his cells were 100% donor cells. That was good news.
The biopsy also showed that Lucas was making cells that were stopping at the last stage of creation. They think that the cell maturation arrest was due to immunosuppression drugs he had been on for 9 months, and or possibly the amitryptaline we added in July for sleep. We took off both of those medications, and his ANC climbed up a bit but not enough for him to return to school. The platelet destruction seemed to be a separate issue so I begged them to look ate is immune system and do any test they could to see if it was immune related. The doctors didn’t think that was necessary. They were very hopeful that it was just the medication, and the virus. That wasn’t good enough for me. I just knew it was his immune system. A fellow mentioned a platelet antibody test and a post platelet transfusion check. The doctor agreed that it wouldn’t hurt to check.
Thankfully that helped them to see that Lucas was fighting two separate issues. They decided that it could be viral, they really weren’t sure. An IVIg treatment was suggested and they said it couldn’t hurt. They gave him one, and he was able to hold onto the platelets, but his ANC wasn’t rising as high as we had all hoped. You see, when your body makes neutrophils it makes TONS at a time. So we should have seen the number rise well above 500. It had only gotten up to about 350 or so, but he was also over 30 platelets. So we were happy with the progress. Was it the IVIg, or was he getting over a virus? Not sure but he was fever free for almost two days, and I was getting sick. As was Harrison. I knew we had to bust out of there fast so we could come home and get the baby to the doctor. They discharged us late at night on October 16th.
The next morning I took Harrison to the doctor, and they wheeled us right down to the ER for a breathing treatment and the same steroid they gave Lucas for croup. That was awesome. It worked super fast and Harrison did not have the paradoxical (crazy) reaction that Lucas did. On October 19th we took Lucas to the UMass campus in Worcester for a clinic visit and we were happy that his ANC was 400, and platelets were 80. We were thrilled to see him making cells on his own. Later that night he had a low grade fever. I gave him some tylenol, and the next day we were outside playing with no problems. We thought we were totally on the mend. The G-Tube site looked amazing, and he was having fun at home trying to enjoy the Halloween season.
That’s his spooky smile, and all of his pumpkins. This kid loves halloween, 365 days a year. He doesn’t look sick does he? He sure didn’t look sick to me. That night he crashed with a high fever, and we went back to UMass to their ER and they said his numbers looked GREAT. So all of a sudden, 24 hours later Lucas WBC was up to 8.8, his ANC was 5,000, and his platelets were 93. They said we could go home. I looked at them in horror. I was looking down at my son who was VISIBLY ill. His fever came back to 103 after tylenol and his blood pressure was 144/112, his heart rate was resting in the 140’s. They called Boston Children’s and Lucas was transferred there within the hour via ambulance.
This time they put us into their ER where we spent another long night into the morning waiting for a room. They finally placed us on the 10th floor and we fought the fever for a few days. His numbers came all the way back down again after the fever went away. I knew something else was going on. They asked me what I wanted to do, where I wanted to follow up. The doctor suggested another IVIg and to pull the PICC line out and send us home. With a PICC line you have to go to the ER for any fevers. I said how about we skip the IVIg, pull the PICC line to see what his body does on it’s own, and follow up at The Jimmy Fund in two days time. The nurse practitioner loved the idea, because then we would know if it was his immune system or not, as we knew he wasn’t really having symptoms of a virus. Just a little cough remaining from his previous admission.
About an hour or so later she came back up, with the doctor. I knew that this doctor being on service this time was an odd coincidence, as she was the stem cell transplant admission doctor we hadn’t seen for a year. My gut knew that Lucas did not have a viral illness. The doctor said that she while she liked my plan, she re-checked all of the labs that had come back from the past two weeks for Lucas. She found that test that the fellow suggested, from when I begged them to look at his immune system. Lucas had tested positive for the platelet antibody testing. Which is not good. She diagnosed him with Evans Syndrome and validated my fears. I was right. Lucas got a life threatening auto immune disease from his transplant that we didn’t see until we had stopped the immunosuppression drugs. His immune system is destroying his platelets, and his neutrophils. What a horrible thing to be right about.
There is no cure for Evans Syndrome, and 74% of people who have it relapse often, and don’t respond to treatment. It can cause very serious life threatening conditions, and he is susceptible to infections again. He kept the PICC line, and they gave him another IVIg and sent us home so we could be here for his “Re-Birthday” party day. Which is today. I’m having a hard time celebrating a transplant that gave him something else that can potentially kill him, as he didn’t respond to last weeks IVIg treatment. Tomorrow we go back to his previous hemotologist / oncologist at UMass. I guess this doc has a pretty good sense of this complication, and different ways to treat the symptoms.
Lucas can’t go back to school, and we pulled Joanna out of preschool because it will hopefully keep him out of the hospital a little more. Preschool is horrible for neutropenic kids, as it’s a breeding ground for all kinds of viruses. So I guess I got my wish. I get to homeschool my kids, get no breaks, and have very little help at home with Lucas. I always wanted to homeschool. That is until his behavior got unbearable. This is why I can’t seem to celebrate today. Not only could he die, but he is a miserable little dude who just wants to scream and hurt those around him. I just can’t stop crying. I feel like I am grieving all over again the way I did when I found out he needed a bone marrow transplant. I want to smash things, and run very far away.
Yet, here I am. Trying to remain positive. I had to quit school, my job, my life. I am still pushing forward with my yoga practice and education, but I don’t have time for it. I will have to MAKE and find the time for it, because it’s all I have to keep me sane. Today I found a few minutes to use my feetup trainer down the road. Yoga is what brought me inner peace, and the feelings of being able to be positive when shit gets bad. I need to make time for yoga, and my music or I will just shut down. I know I need to do these things for myself. I’m so happy when I’m singing, or when I’m upside down.
Maybe one day I will get around to finishing my scripts, writing new songs, or even writing the book I’ve always wanted to write. The story of my life is so complicated it really could be one hell of a movie. I am just trying to get by. Some say I’m so strong, and at times I really am. Today I feel weak, and depressed. We are all stressed out, tired and we don’t get the help we truly need here at home. We get some, and I guess that’s better than nothing. People just shouldn’t have to live this way. Things are pure insanity at times, and I feel like maybe it is time to write that book slowly…
Thank you for allowing me to have this space to vent and speak freely. Many of you have asked how you can help. I will say that we are pretty much broke, and hungry. We aren’t the type of people who like to ask for help, but we have learned that sometimes it’s the only way to get by. I have decided to apply for disability since I was diagnosed with PTSD back in May, and can barely cope each day. I cry myself to sleep at times, and I am the happiest person on the outside. I try to be positive on my social media accounts, and sometimes I really do feel happy. However, deep inside I’m scared. I am so scared of how or when I will lose my son. I can’t shake that ache.
Here are the links we have setup for our family:
PayPal via Friends & Family
Go Fund Me (They Take 5%)
Meal Train This is a new one for us!
Amazon Wish List Lucas’ Needs & Wants
Be The Match Please Join The Registry
We have met plenty of mother’s who’s children don’t have matches in the national bone marrow registry. In the UK everyone is pretty much on the list. We should be here as well, but it’s just not how the states do things. Please ask Be The Match for a free cheek swab kit, and possibly save a life. Also you can donate whole blood or platelets! There is such a shortage right now. If you can get to Boston Children’s donation center specifically and if you are an A, B, or AB blood type they could really use your platelets, everyone else WHOLE BLOOD. Please and thank you! Can’t get to Boston? Go somewhere!
Thank you all for reading this, and sharing our story. I just wish we had a more positive day to celebrate here at home. I wish things were different. We just wish he could be happy and healthy. Today it seems like either one is merely impossible. We have to somehow make the best of things. I don’t even know where to begin, so I’m choosing to breathe.
Thanks for all of your love and support.
Now I’m gonna go try to read Buys Phillip’s new book This Will Only Hurt A Little. Oh wait, I can’t do that lol… What am I thinking. I don’t have the time!
Send Chocolate & Tequila
Lucas Kelley c/o Lindsay Taylor PO BOX 7, PUTNAM CT 06260