Yesterday was our “scheduled” clinic visit and Kennedy gave us another stellar performance getting her port accessed. Austin and I couldn’t believe it! She was nervous but sat right up and didn’t cry or flinch! It was encouraging to see her so brave. Kennedy’s legs and feet were absolutely covered in bruises, and two were growing at a steady rate over the weekend, so despite her platelets being at 21 (they normally don’t transfuse over 20) she was given platelets for her symptoms. Dr. Norwood thought this was necessary because of her history of internal bleeding both in her stomach and kidneys/bladder. Her red cell count (hemoglobin was 7.8) was also shot but he decided to use it as a gauge to see if her counts will recover on their own. This means another visit on Thursday for counts and most likely blood. Her white count also took a dive and her ANC went from 970 on Friday to 300 yesterday. A quick reminder on what normal range is: WBC 4.5-17, RBC 3.8-5.4 (hemoglobin 11-14, hematocrit 32-42, platelets 140-440, ANC 1500-11,000. Because Kennedy just had platelets a week ago and red cells a week and a half ago, there is some concern that she is transfusion dependent right now. That is why Dr. Norwood did not transfuse red cells despite her being in the critically low range. The hope is that she will begin producing some healthy cells on her own and we are using the RBC as an indicator. He did stress though that if she becomes lethargic to call immediately and if she has even the slightest fever to call because her counts have bottomed out. The Drs. believe that the harsh treatment schedule and PEG injections just wiped out her bone marrow which is what produces blood. He did stress that if her WBC and platelets are not recovering by Thursday we will NOT be admitted for treatment on Monday. I don’t know that this will delay her a week but at least a few days for sure.
Well, three months today Kennedy was diagnosed with leukemia. Wow! Feels like at least 6 months, if not more. Her medical expenses (clinic and hospitalizations) for the last 3 months, not including pharmacy charges, has topped $150,000. I am so thankful for OHP and despite its shortcomings, has saved us from certain financial devastation-especially because we have 8 more months of intensive treatment left and 2 years of maintenance. In some ways I am thankful too that this is not yet covered by our new insurance because they have a lifetime max and I would not want to be cutting into that if she ends up relapsing or needing a transplant.
On another note, Keith is really enjoying his new job. I don’t think he likes wearing long pants on a hot day (uniforms) but he is doing new things (like driving equipment) and earning overtime which helps. We were pleasantly surprised by his first check and I enjoy not washing his greasy clothes! Getting up at 3:30 am is hard but we’re making sure we have some time together on the weekends and try to at least have daily updates with each other. Last night we watched Jeff and Caryn’s girls so they could have a night out for their anniversary and we had a blast playing with the kids. I’m always so amazed at how much Amber and Emmy love Uncle Keith because he’s not the warmest, fuzziest guy. He sure loves the girls though and Amber was content to snuggle on his lap and watch American Chopper. It was very cute.
Austin is doing well and told me yesterday that although he doesn’t want to be away from me and Kennedy, he is looking forward to going back to school and playing with his friends. He will be starting soccer practice ASAP and is ecstatic about that. He has really missed his friends this summer but it has been reassuring to him to be with his sister during this difficult time. Keith and I are working out a schedule (alternating weekends) to have some one on one time with Austin. This last weekend Austin and I did some shopping (soccer stuff) and had lunch and played at Bullwinkle’s in Wilsonville. I barely beat him at minature golf (despite his huge lead at the 9th hole) and he kicked my fanny at video games. We spent Sunday weeding the yard and trimming plants-he was a really great helper and I don’t think Grammie and I could have done it without him. Papa was visiting Grandmama Marty, Uncle Bill, Aunt Jen and the kids but he has done more than his share in the garden-I guess it was our turn. This weekend Papa, Daddy and Austin will be heading to the rodeo to watch Ross Coleman, Justin McBride and their friends ride to raise money for another local rodeo cowboy, Jack Peterkin (www.jackpeterkin.com) who is fighting testicular cancer without health insurance. A great cause I must say!
Anyway, I’m holding up. Some days are better than others for sure. I will begin working on my research project once Austin returns to school in September. I’m anxious to be doing something of my own again. I’m also embarking on a project and need lots of prayer to make decisions regarding it. Without giving any details, just pray for direction and timing. It would allow me to be home but changes the timing on some other things. As far as other prayer-continued prayer for us and healing for Kennedy.
Love and blessings,
Melenie
