Ok, I tried this yesterday and when I was almost done, I accidently hit a button on my keyboard and deleted everything! I was so mad that I couldn’t touch it again until now-but somehow that is okay because now I have more to write! As if I need an excuse to be long winded! Enough about me…Kennedy had a blood check on Thursday and her counts were still pretty low. Her platelets were at 76 (half of normal) but this was not an accurate indicator of whether or not they were recovering because she just recieved a transfusion on Monday. Her WBC was only 0.3 so her ANC was still shot. Her red count was a mess with a hemoglobin of only 7 so she received a transfusion of red cells and looks so much better. She never ceases to amaze me-just last week (August 1) she had to be held down to have her port accessed and now she sits up without crying or fighting. Keith said that maybe she realized (after 3 months) that this was going to have to happen with or without her cooperation. She’s comfortable enough now to actually push her own flush and Heprin (to prevent clotting) when she goes to clinic or day treatment. I believe she is looking for control wherever she can find it and that is very empowering for her. So this is the plan for Interim Maintenance 1-she will go to day treatment on Monday at 8am as planned. We are to pack as if we are staying for the full 5 days. If her counts are not recovering (her ANC must be 750 and her platelets must be 75) we will go home and do it all again on Thursday at 8am. If her counts are good, she will be sedated and will have a bone marrow aspiration and lumbar puncture with intrathecal (in her spinal fluid) Methotrexate. Kennedy will then be admitted and recieve 24 hours of high dose Methotrexate and IV Vincristine. I told Dr. Olson that they are making it very difficult for us to make any plans and she laughed! As a planner (ok, and self proclaimed control freak) this is a huge learning experience for me. I know without a doubt that God is using this to work on some real strongholds in my life but it doesn’t necessarily mean that it is going well or that I’m handing it over easily. I will be posting on Monday one way or the other to keep everyone updated.
In addition to the above, we have started Kennedy in a study regarding appetite stimulants. Kennedy has already lost almost 15 percent of her body weight since her treatment began (going from 44 lbs. at diagnosis to 38 lbs.) and while this may seem like a small amount-for those who have seen her it is a big difference. She went from wearing a size 6 pants back to a 4 and she weighs less than she did a year ago. This study compares two drugs-one that they have given children for years and one that they have used with women who are being treated for breast cancer with less side effects. Right now Kennedy is taking the one that is normally given to children and does she hate it! It smells like mouthwash and she says it is minty hot-two flavors she HATES! Her first dose was a real battle but this evening went better. It will also make her drowsy which is good because she has been suffering from insomnia. If she continues to lose weight, they will try the new drug and if this does not help we will have no choice but to insert an NG tube. It is our prayer that the appetite stimulant works with few side effects.
Her spirts are good though and today she went with Grammie, Mommy, Auntie Caryn, Emily and Amber to the Farmer’s Market in Gresham. There was a cruise in going on so not a whole lot of shopping to do but it was still fun. She even insisted on doing some walking which was a change from last week. Tonight she was exhausted and despite having her cousins staying the night crashed early. This is really nice since she has been going to bed as late as 3am. Last night she went to sleep good but woke up around 2:30am and lost everything in her stomach-not a big deal except it was in my bed and luckily Daddy was there to give me a hand. I called Dr. Norwood (much to his delight) and he said that because she had no other symptoms (fever, continuous vomiting, diarrhea, etc.) he wanted me to call in today and let him know how she was doing. When I talked to him this afternoon (Kennedy was fine today) he only vaguely remembered talking to me and apologized for babbling. I laughed and told him it was fine. Please pray for the two oncologists. Since Dr. Chu left they have really been swamped and while they are in the process of interviewing, they still haven’t found the right one. Both doctors are incredible and we think the world of them but I know this must really be taking a toll on them.
Austin is excited for soccer to start. He has his first practice on Tuesday and can’t wait to hang with his pals again. While he has had many offers this summer, it has been hard for him to be away from Kennedy and I, not to mention that he is a very big help at the hospital. 🙂 He likes to push his sister’s stroller when I don’t carry her, and helps with getting things she needs, asking questions, entertaining her, etc. I told him that I don’t know what I’ll do without him! It has helped him a lot to feel like he is a part of this, we are just very careful not to give him more than he wants and he is very good about expressing what his limits are! Tonight Austin, Papa and Daddy went to the Ross Coleman Invitational to raise money for local bareback rider, Jack Peterkin. For those who are big rodeo fans, riders such as Ross, Tator Porter and Justin McBride are in town so Austin was looking forward to this all week. Next weekend is my date with Austin and I think we might go see a movie-at least that will be my suggestion. 🙂
Keith and I are doing well. He is enjoying his new job and is actually making about the same as what he did driving a dumptruck. That is such a relief, the bonus is of course, that he also has benefits! He really likes the guys he works with and is actually going to play poker next weekend at another driver’s house. That will be fun for him and it is good for him to hang with the guys. I tend to struggle more outwardly than he does (he internalizes everything) but this could be because I’m in the trenches day in and day out and tend to wear all of my emotions on my sleeve. I know that this is really hard on him too (and having to work so much instead of be with us) so this should be fun for him. Continued prayer for us and for strength and wisdom always goes without saying.
A quick reminder-the Motorcycle Show and Benefit Dinner Dance are in 2 weeks and it is sure to be a blast! With Kennedy’s round of treatment, it is uncertain whether or not she will be able to attend but we plan to be there and look forward to seeing everyone there! Also, we are still collecting for the garage sale and if anyone has donations they can call us to make arrangements to get the items there. This is going to be big so feel free to attend the sale too and find that treasure! For those who remember the donation of pennies from the Carwash/Plant Sale the final total was over $271!! That is A LOT of pennies! There are more fundraisers scheduled for September and beyond so keep checking back for details on those!
Ok, I’m beat and must hit the hay soon but I will post Monday to keep everyone updated. Oh, I do hope to add new pictures soon. I’m having a problem with the upstairs computer which has all the pictures downloaded on it. I’ll try and get this resolved soon!
Love and blessings,
Melenie
