On December 26, 2016 Tucker woke up from a regular nap with swelling on the right side of his neck. Prior to this Tucker had a runny nose but had been acting fine otherwise. No fevers, no pain, just a normal 1 year old running around laughing, playing, and wanting to do everything for himself. We took him to his pediatrician the next day and were given antibiotics. Tucker had an ear infection and hopefully the swelling would go down as the infection cleared. We followed up a week later with no change in the swelling. We then saw two ear nose throat physicians, one with a pediatric specialty. The preliminary thought was that Tucker still had an infection, but of course testing needed to be done.
On his 2nd birthday Tucker visited the pediatric ear nose throat physician. By this time we could see something coming out of Tucker's right nostril. A piece was sent for biopsy and cultures were taken. A CT of his neck and face were also ordered, and we were put in touch with a pediatric physician with ties to Tarzana Hospital.
On January 20, 2016 , Tucker had the CT, chest X-ray, and a fine needle biopsy of his swollen right lymph node. As he was waking up from sedation, we were told that the preliminary stains showed a malignancy. Those words changed everything, infection was no longer a possibility. The floor fell out from under us. The doctor said we did not need to go to Children's Hospital of Los Angeles immediately but we would be hearing from the hospital soon.
Sure enough we were admitted on Sunday January 22nd. A CT of his chest was done that night followed by daily tests. Tucker had an MRI, bone scan, bone marrow aspiration, port-a-cath placement, and PET scan, most with sedation to keep him still and comfortable. After each sedation he seemed to wake up a little easier.
On Thursday January 26th we were given the official diagnosis of stage 3 rhabdomyosarcoma. The primary tumor was in his nasopharynx with spread to his right and left lymph nodes of his neck. All scans and tests came back clear except for the areas known about. So we begin the treatment plan.
His treatment plan is 42 weeks long with a 6 week radiation treatment. Surgery to possibly remove the tumor may or may not be an option and will be discussed later in the treatment. For the first 12 weeks Tucker will get one chemo medication every week (vincristine); and every 3rd week he will be admitted for two additional chemo medications which combines with the vincristine to be referred to as VAC (vincristine, dactinomycin, and cytoxin,). After the VAC his blood counts will fall within the week; leaving him very susceptible to infection. If Tuck has a temperature of 100.4 twice, an hour apart we are to call the CHLA fellow on call. If he has a one time temp 101 or greater we are to call and go straight to the ER.
Tucker started the treatment of chemotherapy on the night of January 27th. He tolerated it well; no issues with nausea or vomiting but he was given medication to help prevent it.We were discharged and came home on Sunday January 29th with a follow up lab appointment on Thursday February 3rd. We had a scare with temperatures before the appointment, but learned that we needed to get a more official thermometer that we can trust. Amazon prime delivered us a hospital grade Welch Allyn thermometer that we trust completely.
The morning of the lab appointment Tucker was feeling warm to us and had a temperature of 100.2 F. We went down for his labs and he still had the fevers so we were admitted that night. His counts were low but the doctors told us that is expected. Still hard for us to wrap around our brains though. His absolute neutrophil count (ANC) was 0.03, a normal ANC is 1.5 to 8.0. Tucker was in the hospital for 4 days. His ANC rebounded to 1.4 by the time we left. He was given his scheduled vincristine dose and he also received his first blood transfusion as his hemoglobin was low. We were told in the beginning to expect lots of blood and platelet transfusions due to the side effects of chemotherapy. The swelling is gone and we cannot see anything in his nostril anymore; all positive signs. We are getting used to this new normal. The doctors say we will get used to his counts and know when they are low.
Tucker just received his second VAC and he tolerated it well. He is demanding that "my do" everything from getting in his car seat to making lunch. Our next appointment is Monday Feb 27th for labs, clinic with the doctor followed by vincristine administration. Tuck has become tolerant of the blood pressure cuff and holds his arm out for the nurses now. He is still sensitive about his port-a-cath. We put a numbing cream on before it gets accessed for labs, but he still cries out. We feel it works and think he cries out because he's scared and doesn't like being held down. Who can blame him. He has been such a strong, brave boy through all of this. He has given us strength. One day at a time, one week at a time.
We cannot even begin to articulate how thankful we are to everyone who has given us a hug, text, card, email, note, donation, thought, prayer, or phone call. The friends, family, and community around us is so strong and supportive; with it we will beat this terrible thing called cancer.