I posted an updated entry earlier but for some unknown reason it re-posted the one from Monday. Hmm…not sure but I’ll try it again. We went to the clinic today to have more blood drawn because Kennedy had more new bruises despite being given platelets on Monday. She was also anemic on Monday so I thought it would be a good idea to have that checked. Well, her platelets were low (50) and her hemoglobin RBC was 9 but her ANC was 970! The nurses believe that her numbers will continue to rise but they will take another CBC on Monday when she has her appointment. It was a little bit of an inconvenience driving in to Portland today but it almost guarantees no ER visits this weekend and that I can live with. On a very good note, Kennedy did absolutely awesome having her port accessed today! We were so happy! Nurse Suzi, who accessed her on Monday, was there and Kennedy sat right up-no flinching, screaming or crying! We were all so proud of her and she received a special certificate for being a big, brave patient. Boy, was she proud of that!
On a down turn, Kennedy will not be having a rest week between Consolidation and Interim Maintenance 1. The Drs. and the Children’s Oncology Group (COG), the group overseeing her research protocol (and most protocols) have decided that because of her slow response and high risk status, and because she has already had one treatment delay, they have decided that if her counts have recovered then she will be inpatient on August 15th. She was scheduled for the 22nd but it looks like her numbers will be fine (she must have an ANC of 750 and platelets at 75). They will also delay her bone marrow aspiration until the 15th so they only have to sedate her once. Please pray for all of us during this time because this is the phase of treatment that will be hardest for Kennedy. Kennedy will be receiving high doses of Methotrexate via IV over 24 hours which is known to cause horrible (cankerous) mouth sores in her mouth and throughout her digestive and intestinal tract. The nurses will be giving her medicine to counter the effect and even using special mouth wash but Kennedy has already lost 15 percent of her body weight and there is some concern that she will not want to eat (obviously) so an NG tube may have to be placed to provide enough calories and nutrition. This high dosage requires 3-5 days in the hospital (with no complications) and a Leucovorin rescue on day 3. Most children suffer from liver and kidney complications so it is important that her body processes the chemo effectively. She will also need to take an oral med which could further complicate this. Please check the above schedule for planned hospitalizations-I know that I would appreciate calls and visitors because being in the hospital so much gives me cabin fever. This is very hard on our family both emotionally and financially so please pray for: Keith and I (wisdom and strength), Kennedy (healing, peace and strength) and especially Austin (he will be trying to finish his summer and start school and it is very upsetting for him to have our family separated so frequently).
On a good note, our doctor’s office was able to get OHP to pay for 60 Zofran every 30 days rather than the 9 every 18 days that they had originally approved. This to the tune of almost $1500 per month! What a blessing this is!
Also, we are so excited about the upcoming Bike Show and Dinner Dance planned for Saturday, August 27th. Shawn attended the Spaghetti feed put on by the Moose Lodge and wanted to help. This is such a tremendous gift to us and we look forward to seeing so many there! We are continually blessed by so many who show so much love our sweet baby girl-even when they don’t know us! For those who love motorcycles and music this is sure to be a great event!
Please pray for the following families:
Warren-Burkitt’s Lymphoma and is currently hospitalized
Joshua-Ewing’s Sarcoma
Maggie-MLL
Kaitlin-ALL
Emily-ALL
Oliver-AML
Love and many blessings,
Melenie
