Everyday I hope to be able to work on this and it just never seems to happen. We went home on Sunday and Kennedy really perked up and the sight of her toys and familiar surroundings. She had some pain but seemed to manage it well despite her unpredictable personality. She was walking around the house, though not up the stairs, and even wanted to help put the dishes away on Tuesday. Wednesday we returned to Day Treatment at Emanuel and things appeared to be well. Kennedy’s counts were where they expected and she did not even need any transfusions. She was very hungry and moody from not having been able to eat breakfast and devoured her lunch before her chemo. Everything appeared to be good and we left the hospital in time to get her brother.
That afternoon, she began to complain of pain in her back and legs so I gave her some Tylenol with Codeine. After a few hours the pain had increased to a level that was intolerable and her head was pounding. I called her Oncologist and she had us admitted for pain management. After riding for 45 minutes in a car with a very upset and nauseated child, we arrived and went directly to the toddler unit. Her termperature was normal but within an hour it had spiked to 104 degrees, her heartrate was 150 bpm and her blood pressure was low. We found out yesterday that she was going in to shock. Wednesday night was a battle as they tried to manage the fever with Tylenol, the pain with Morphine and the vomiting. They believe she may have had a spinal headache and infection. They started her on large doses of antibiotics and did a blood culture. Yesterday morning she was vomiting blood and was lethargic-it was a debate about whether to send her to Ped ICU. She received a transfusion of platelets and the antibiotics kicked in and by evening she still had an elevated heartrate but her fever was subsiding and her blood pressure was closer to normal. This morning, her temp was 101.5 and her bp was low but they expect her to be doing much better. She is eating today so that is always a good sign and she’s back to being Dr. Pickle and Mr. Bean. They are decreasing her fluids (this was used to bring her bp up) but are giving a whole blood transfusion. This is just such a roller coaster ride-you can’t predict anything.
Other news, her bone marrow biopsy came back yesterday with high levels of Leukemia still in it. This was a huge disappointment and she is now classified as a slow responder increasing her intensive treatment for up to 1 year. I was just devestated and upset but her doctor still believes she will fall into the 99% who are in remission in the first 30 days. Of course, this means another spinal tap, more Methotrexate in the spinal fluid and another bone marrow biopsy on Wednesday. They are sending us home with stronger pain meds that she will take for 12-24 hours after her procedures as a preventative. Dr. Olson reminds us that it is only a set back, not a problem.
Ok, a quick response to how we discovered this. While Kennedy had been tired, had bruises and had decreased her appetite (Kennedy had an ENORMOUS appetite before) we were able to dismiss them because she got up at 5 am, was a typical 4 year old and was coming off a growth spurt we could not dismiss the blood in her urine. On a trip to Newport, I took her to the bathroom and discovered she had urine the color of cranberry juice. I called Dr. Skau’s office and took her there for what I thought was a severe bladder infection. He told us that there was no bacteria in her urine and began checking her out and asking questions. They all seemed easy enough to explain away until he said her liver and spleen were enlarged along with her lymph nodes. He mentioned a couple of things and said she needed to be admitted to Emanuel immediately. Sonja drove us and within 30 minutes of arriving Keith was here. Six or seven doctors came in and examined her but I should have known something was up when we were only in the ER waiting room 5 minutes despite the fact that it was packed with kids. They did a CBC and before midnight they confirmed that it was a type of Leukemia. We did not find out until the next day that it was Acute Lymphoblastic Leukemia Pre-B High Risk (and now slow response). Her WBC were dangerously high 200K (50K made her high risk) and we needed to make a decision immediately about whether to stay here not knowing if we would qualify for OHP or fly to St. Jude’s in Memphis. She could not be sent to St. Jude’s if we started treatment and she needed it now. We decided to stay here knowing that if we went we would have to relocate and have no family or friends support for 3 years +. We opted for the research treatment and still believe it is the best choice. She has a great team of doctors and staff here so we know that it was best.
I hope to write soon-we’ll see how things go! Please continue to pray-it’s a long and difficult road for all of us.
Mel
