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Sunday, February 13, 2011 7:23 PM
Because her chemo is given day 1, 11, 21, 31, and 41 this cycle we have become Thursday Monday patients for now. If Taylor's counts are not good enough for chemo they put the Methotrexate off for 4 days and still give the Vincristine on Monday. Now I am not positive if that will change her "dates" making it that Vincristine is still on the exact dates and the Methotrexate always having to be 2 days after or not. Bobby is going to go with Taylor this next time because I have to work both Monday and Tuesday. They will just stay a few extra days if need be though.
The benefit had a great turnout and was very happy to see so many familiar smiling faces. Hats off again to my family, they did such a great job!! Thank you sooo much to not only our families but friends, neighbors, coworkers, and to all the people who came out just to help out. With an average cost of $2,200 a month for just food, gas and lodging on these appointment dates the costs add up quickly. We also have our normal monthly expenses to worry about and overwhelming is not even a word that can come close to descibing the added weight money brings. Take it one day at a time is all we can do.
Please continue to pray for my sweet sweet girl, knowing the sicker days are around the corner scares the day lights out of me. I need to figure out how to continue to be strong when you can't so anything to take it away for her. She is so strong, I love her!!!!
Thursday, February 3, 2011 4:07 PM
Taylor is going shopping for a new outfit for the benefit this weekend. I can only imagine how overwhelming Saturday is going to feel but I can not wait to see such wonderful community support !! I hope to see many of your smiling faces there :-D
Thursday, January 27, 2011 10:14 AM
Just arrived here at the Infusion Suite for Taylor's Blood draw and appointment before the Lumbar Puncture. As long as all goes well and No transfusions are needed we will be outta this place around 230. I hope so cause Taylor wants buffet for dinner!!
Wednesday, January 26, 2011 10:41 AM
We are about packed up for the trip back downstate. I am hoping that the hotel being more than it was last week and Bobby not feeling the greatest are not going to be the beginning of another LONG trip :-)
Friday, January 21, 2011 8:18 PM
This past Thursday, January 20th we had appointments in Ann Arbor again. We got to the hospital around 1030 and went upstairs to the Peds Infusion Area and they accessed Taylor's port, drew blood and we waited. Her heart rate was up and she was borderline for her Hemaglobin which was 7.7 so they planned for a transfusion before we were to head home.
Saw her Dr, Lauren and ended up in the treatment room around 1 which was her planned time. I went in with her for the first time for any procedure. Man, that kid cracks me up!! She was asking for more drugs ( they give her Versed, the amnesia drug, and Morphine) then when they were counting the drips coming out and into the test tube, she could feel them dripping!! The dr and nurse said that sometimes kids are just that in tune with their bodies.
Next they pushed the Chemo in....... she giggled so cute when they started!!! She said it made her bottom feel funny. I asked her if it felt like when they give IV contrast (feels like you pee your pants hahahaha) and she said it was more tingly. Too funny either way.
While I was in with Taylor, Cassandra went to get the tire that blew fixed and the spare put back and that turned into the truck getting 4 new2 tires :-( I know i know, BUT YOU NEEDED THEM......still, i hate having to spend money, period.
We went back into the Infusion Suite and waited for her pre-meds to be given and blood started. She had a reaction to the blood and turned rather pink. Not red but a pretty shade of pink with white blotches so we had to stay for a bit after to make sure that with her "washing" solution after the blood it would lighten and it did.
Started the trek back home around 530pm and with knowing that the lake effect was supposed to be bad I was happy to have new tires. The ride was LONG..... got into Ishpeming around 330am :-( The lake effect was soooo bad in spots that there were snowbanks in the road, driving 2 miles an hour feelin like 110mph and not being able to see. The little girls were sleeping and in all honesty..... there is NOWHERE to pull over and stay ANYWHERE :-( Our social worker (after hearing my ride there story) had asked if I had convinced myself to fly yet. I was under the impression that it was an every once in a while thing but it sounds like either mom or dad can fly with her EVERYWEEK through a few different places. Some places donate their time and stuff but some charge a nominal fee. We will be using this avenue!
January 27th Taylor has to be back in Ann Arbor for another Lumbar Puncture and Chemo. After this appointment she will have blood drawn here on February 6 and if her counts are well enough we will start the Inrterim Maintenance I Phase.
Starting approximately February 8 Days 1, 11, 21,31,41 she will get Methotrexate IV over 10-15 minutes (each dose is increased from the previous one as tolerated) and Vincristine IV push On day 31 she will also have a Lumbar puncture and IT (intrathecal-in her spinal fluid) as well.