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5/5/2017 Latest post:
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
On Friday, April 21, our Kate was diagnosed with Diffused Large B-Cell Lymphoma (DLBCL) and here the story goes...
She had complained about knee pain since last August (2016). The pain was off and on during school volleyball and soccer seasons. We, of course, attested the pain to playing ball. During that time, ice and ibuprofen allowed enough comfort for her to play both sports without interruption.
On Wednesday, March 15, she complained to us again that her knee was bothering her and again, we asked her to ice and take ibuprofen. On Friday morning she woke up limping. I then decided to make an appointment for her to see an orthopedist. The following Tuesday, March 21, she got an x-ray. It showed no signs of injury and we decided to begin physical therapy. She took some time off from club volleyball practice, but was able to compete in a 3-day weekend tournament on Friday, March 31. The following Friday, April 7 we went to her aunt's play and during the evening she was in severe pain. We got home, she iced it, took ibuprofen and then went to bed. She said the pain woke her up in the middle of the night and woke her up early Saturday morning.
On Monday, April 10, we were able to squeeze her in for an MRI before she took off to the beach with friends for Spring Break. That Wednesday, Dr. Heard, her orthopedist, called with the MRI results. He said that her ligaments, tendons, meniscus, etc. were all fine, but that he and the radiologist found a spot on the bone in her knee. He explained different possibilities of what it could be and then explained that it didn't look like any of those possibilities. I then asked if it could be cancer and he said yes. He said that he got us an appointment with one of the top pediatric orthopedic oncologists for Monday, April 17.
On Monday morning, she got an MRI and a contrast MRI and then we went to see Dr. Heinrich. Dr. Heinrich, from the MRI results, thought that it resembled a bone infection. He said that the thought of it being either cancer or leukemia didn't make sense with her history and symptoms. The next step was a bone biopsy. We were able to get in for the operation on Tuesday, April 18. They took about a nickel-size of her bone. He did not find immediately that it was an infection, but decided to start the antibiotics until the final results. The final results came in on Friday and as mentioned, they were not in her favor.
Needless to say, we were in complete shock, as our minds were wrapped on it being a bone infection and her going home with a PICC line for antibiotics for 3 weeks and another 3 weeks of oral antibiotics and her in a wheelchair for 4 weeks and then returning to normal activity. It was no fault of Dr. Heinrich. For us, he was giving us hope. In fact, he was incredible in finding that it was indeed lymphoma. Most cases similar to hers sometimes takes doctors to find out after a second or third bone biopsy. He was diligent enough in the testing to find out that it was lymphoma on the first time (silver lining).
The next days were consumed with us digesting and processing that she has cancer, researching what DLBCL was, what we needed to do for treatment, reaching out to professionals and how to explain it to our friends and family. She would need a CT scan, bone scan, PET scan, lumbar puncture (spinal tap), bone marrow biopsy and her port placement within the week. We got relatively immediate results that her scans were all clear (silver lining). The lumbar puncture would determine if she had it in the brain and the bone marrow biopsy would determine if it was in her blood. We would not receive these results until the Monday (May 1) after. Monday would also be the day we would be explained her "road map" of treatment, explanation of the chemotherapy drugs (R-CHOP) and their side effects.
The weekend passed, Monday came along and at 2pm we found out the the cancer was isolated in her knee (big silver lining!!). Dr. Lotterman at Ochsner took the lead on her treatment and was thorough and patient in explaining to Kate, Kevin and me, as well as 11 of our family members what the future would entail. Here we are, first day of chemo treatment was today, Thursday, May 4. I cannot express enough how amazing, incredible, brave, courageous, strong and positive Kate has been through all of this. I know that teenagers are more resilient than us, but she is above and beyond compare. I am sure we will have moments of anger, frustration, pity, defeat, etc., but she has not shown one sign of negativity thus far. She has thought of others through all of this, especially her sisters, and has educated people on what is happening. She truly is a special person.
We have celebrated the silver linings in this, that DLBCL is curable and that there is science, technology, medicine, doctors, nurses and support staff who can help cure her. We would not be able to be this strong and tackle this without the most incredible love and support system of our family and friends.
I never thought this would be our story, yet, whoever does. So, here we go...#All4Kate.