This week marks the fourth anniversary of Jillian finishing chemotherapy treatment for Leukemia and being in remission from it.
I have put together a picture journey about our experience and hope you will find it informative.
Children with Down syndrome have a 10-20 (some say 30) fold increased risk of developing Leukemia (than a child without Down syndrome). Most cases occur in the first five years of their life.
When Jillian was born on Oct. 10, 2006 she had what is called Transient Leukemia. This meant she had Blast cells or Leukemia cells present in her blood. Blast cells are not normally visible in peripheral blood samples. Most cases resolve on their own within the first six months. Having this condition increases your chances of having Acute Leukemia in the future.
Jillian was born 5 weeks early and had two holes in her heart. She weighed 6 lbs. 9 oz. at birth. The plan at first was to wait six months to repair her heart but she had a hard time gaining weight. At three months she had only gained 7 oz. It was then decided to go ahead and do her heart surgery.
You can see from this picture that she was not doing well. We are waiting here for her to go to surgery. Yes, I was very tired!
Surgery was an intense experience to go through! It is a shock to see them afterwards, and very scary! She had some intense bruising and I overheard some doctors discussing why that was the case. One of them said, "Her Platelets are only 60,000." Platelets are the blood cells that are in charge of clotting and a normal count is 150,000 to 400,000. Her Platelet count would continue to be an issue and progressively got worse.
When she was a year old she started to require Platelet transfusions. She would get bloody noses that would take an hour to stop and she always had Petechiae (tiny broken blood vessels under the skin) She then had her first Bone Marrow Biopsy and she was diagnosed with Myelodysplastic Syndrome. MDS means that the blood has insufficient and improper cell formation. It is a Pre-Leukemia condition. It is very rare in children and one-third of cases go on to Acute Myeloid Leukemia. Since that time I have read blog posts about children that began Chemotherapy when they received this diagnoses, but that was never suggested to us. I wish now we would have been able to do that instead of waiting till she got Acute Leukemia.
It was amazing that at this time she continued to be healthy except for her blood issues. When she was 18 months old she also started to require red blood cell transfusions. When she was two her doctors decided to do another Bone Marrow Biopsy. At the same time Chemotherapy was put in her spine, and she had a port put in. It was horrible starting IV's on her, so we were very excited to have a port. I was not very well prepared for the type of port she was given. It is called a Broviac and has two lines extending out of the chest. It had to be flushed everyday and the dressings changed. She had a hard time recovering from these procedures and was in a lot of pain. Her bone marrow was very sick but she still did not have enough Leukemia cells to consider it Acute.
I remember the day the picture below was taken. It was Valentine's Day and we were taking pictures for our adoption profile. This is also the day Jillian started to run high fevers. Anytime you have a central line there is concern of blood infections. She was hospitalized for 20 days. The fevers would not go away and she totally regressed and could not even get to a sitting position she was so weak. During this time her Broviac was removed because medical personnel thought that was possibly the cause of her fevers. She had a PICC line put in her arm. The PICC line was supposed to last for one month but it lasted for over six months!
It was finally determined that it was time to start Chemotherapy. She would go through six months of treatment. Her diagnosis was Acute Myeloid Leukemia. The treatment for AML is very aggressive. Children with Down Syndrome usually respond well to treatment for AML.
I took her to get her hair cut the day we went in the hospital to start chemo. As soon as they started chemo her fevers went away. I wish now that we had started it sooner.
Chemo was tough on her little body but she handled it amazingly! She struggled with eating and lost weight.
When her hair started to fall out she looked like an old balding man in the back.
We were blessed to be able to do a lot of her chemo at home. If you look in the grass in this picture you can see her IV line. After each treatment week we would have to go in for blood transfusions and blood tests.
By the end of treatment she was mostly bald. The scar on the side of her forehead was from a cyst that had worked its way through her skull and was pushing on the lining around her Brain. She had to have two different surgeries to remove it.
During the process she had around five Bone Marrow Biopsies.
Some of her treatments were done in the clinic and then we were able to go home afterwards.
She had started to walk before she got sick but she had to totally learn again because she was so weak.
I took these next pictures of Jillian last week. It is hard to believe she is turning seven next week!
We are so thankful that she is doing so well! She has been through many medical procedures but always continues to smile and tell everyone: "Hi!"