Sunday, April 29, 2007

She's Home

We have our little family together again! :) Kate was discharged this morning and is doing well. She was so happy to get back home and Ava and Jackson were thrilled too! Except for fatigue and long naps, I haven't noticed too many side effects from the first round of chemo. Cross your fingers that it continues.

Next Thursday we will go back to the clinic for another round of chemo, intrathecal treatment and a bone marrow aspiration. They want to check and see if she is an "early responder" to the chemo so far. If there are no cancer cells in the bone marrow after 1 round she has a very good prognosis. Until then, we will be at home and giving her oral steroids and antibiotics.

It is amazing how we are suddenly so grateful to all be sleeping under the same roof again. I know that is seems strange to say, but after being in the hospital and seeing many children worse off than Kate we feel blessed. We are so fortunate to have a fantastic team of doctors and treatments for this disease. We are also very grateful to have so many prayers being offered on her behalf.

Saturday, April 28, 2007

Good News!!!

Kate's cerebrospinal fluid had no evidence of cancer so she is considered to be standard risk ALL as opposed to high risk. She had her port place 2 days ago and tolerated the surgery very well. She has had 1 dose of intrathecal (in the spinal canal) chemotherapy and 1 dose through her port. She has tolerated these very well so far too. In fact, she is back to her usual smiley, giggly self. Here she is dancing like a princess even with her IVs attached! She is finishing up day 10 of IV antibiotics and will be able to come home tomorrow if her blood counts continue to trend upward. We are so excited about that!

Kate's New Blog

I have had dozens of people ask me to set up a blog for Kate so that they can be informed about her progress and treatment. That being said, I didn't want Kate's leukemia to be all that I blogged on the family blog so I decided to create a separate blog dedicated to Kate and her journey on the path to cure from leukemia. This way, people can check on Kate's progress separate from our family's blog too.
I reposted the first blogs about Kate so that they would all be in one location. (Type A I know but some things can't be changed) :)

Monday April 23rd - Diagnosis

Kate's bone marrow results came back this afternoon and she has been diagnosed with pre-B ALL. This is a subtype of leukemia. It is hard to believe that our sweet little girl that was running around giggling last week has luekemia this week!Our med flight was approved by insurance and we are heading back to Atlanta tomorrow at noon. We will be transported directly to Egelston, the children's hospital in Atlanta. Kate's chemotherapy will begin on Wednesday we will take it day by day after that. Right now we are just trying to breathe...

April 23, 2007 - Waiting and More Waiting

Gratefully, Jason flew up on Saturday and is now with us in New Hampshire. He felt so much better once he saw his Kate and was able to hold her. I feel so much better to see him, to hug him and for us to be able to lighten the other's burden. We were originally anticipating being discharged this morning but ran into a complication. Kate did perk up after the blood transfusions but she also developed a distended abdomen and fevers continued to spike to 104. For this reason our physicians felt that she would not be stable for commerical transport and wouldn't discharge us to go. Because Kate's white blood cell count is so low and she is exhibiting some signs of abdominal infection they were concerned about her being away from medical attention for 8 hours. So then a new plan was formed...Here we are in the middle of the new plan. Kate is currently undergoing a bone marrow aspiration and biopsy. After which she will immediately have a central IV line placed so that she won't get any more "pokes". That poor girl has already had to have 3 IV's placed and have 2 additional blood draws. Late last night her new 5 hour old IV infiltrated and swelled her little arm so much. It was heartbreaking to hear her beg me (again) not to let them give her "any more pokes". After we receive the bone marrow results this afternoon we will know what the diagnosis is and will be able to have a better idea of where to go from here. Meanwhile, the transport team in Atlanta is fighting with our insurance company to try and approve a medical flight back to Atlanta tomorrow. We are praying that this will be approved and that we will be able to get back there quickly and safely. We are hopeful that this will happen. We are also praying that Kate's procedures will go well and that she will not experience much pain as a result. We are touched and quite in awe at the outpouring of love and kindness that we have been shown by our families, friends, community and complete strangers. Now we can only pray that all of the prayers offered on Kate's behalf will be answered.

Friday, April 27, 2007

Saturday April 21, 2007

I am hoping that this will be a cathartic entry and that I'll be able to sleep afterward. Here I sit in Dartmouth hospital in New Hampshire at 4:30 in the morning with my dear sweet Kate. This was to be a long since overdue, "girls weekend" with my best friends Susan and Sarah but the day we arrived Kate became markedly more ill. Her pallor, fatigue and pain brought us to the ER where she was then transfered up to the pediatric clinic. They started an IV, began hydrating her and sent quite a few labs off. The CBC showed several very concerning abnormalities. Her white blood cell count was dangerously low rendering her incapable of fighting any illness and her red blood cell was so low that we were told she'd need several blood transfusions. The differential diagnosis for these gross abnormalities, we were told, was 1. Viral suppression of the bone marrow 2. Aplastic anemia (meaning the bone marrow is not producing any blood lines) 3. Leukemia (which means that cancer cell have taken up the space in the bone marrow where the developing blood cells need to be. After more bloodwork the hematologist/oncologist told us that she thought that ALL (leukemia) was most likely but we'd need a bone marrow biopsy to give a definitive diagnosis. Because we don't live here though, we need to get Kate stable enough to transport back to Atlanta so that we can be admitted to our children's hospital for the biopsy and treatment. Since our arrival Kate has had 2 transfusions, 3 rounds of antibiotics and fluids. After she received the transfusions she began perking up considerably and is not scaring me to death with her unresponsiveness. We have been so grateful for the kindess that we have received thus far. Two church members that are residents came over and gave Kate a blessing. It was a wonderful blessing and did help to ease the pain of it all. Susan's husband, Chris, who is also a resident here was amazing in helping us navigate the system and getting us set up comfortably. Our sweet bishop called the heme/onc physician at Egleston hospital and had a transfer already arranged before we were even seen by our heme/onc specialist in Dartmouth. That took hours of negotiating and worry away. After I spoke with the specialist in Atlanta I knew what the plan would be and she worked with our specialist here to help make it happen. My best friends are meanwhile caring for Ava and checking in on me which was most desperately needed tonight. I seem to mostly be ok but have mini breakdowns when the reality and hurt suddenly wash over me. Kate is really doing much better now. Her fevers are controlled, after a difficult attempt she has a 2nd IV in that is working and she is sleeping soundly. We just want her to get better quickly so that we can get home to Jason and Jackson. Please keep us in your prayers as we go through the next few days and try to get a definitive diagnosis.