"Changes in Plans"
If you wondered why I didn’t put a daily update on this blog yesterday, your guess was probably correct – things turned crazy quickly…….
According to the TVD European protocol, Christi should have started Round #2 of it yesterday. Obviously, she’s not strong enough now to do that. Because of horrible “belly pains” we decided it best not to take Christi to school yesterday and that turned out to be the right decision. I took Shayla and then went to catch up with my wonderful sub (Mr. Jones) for a bit before I returned home so Shayne could get to work.
Christi had a nice morning yesterday. Other than her tummy feeling terrible, she did okay and ate well too. She read, played with Buckeye, played the piano and on the computer. We baked cookies. Suddenly, after lunch, I heard her screaming in pain in the bathroom. In an effort to relax her to help the situation I sat on the floor and read to her – without success. While she was blowing her nose I saw that it was bleeding so I knew I had to call the hospital as she most likely needed a transfusion. I grabbed some books and called school to see if Shayla come go home with her friend, Amber and took off for the hospital.
Well her blood counts produced some GLORIOUS NEWS!! (Yes, she did need a transfusion; however, the LDH and ANC levels were FABULOUS!!) We spent over 3 ½ hours at the hospital (and didn’t even get a transfusion – we have to go back today) however, when the sweet nurse brought me the LDH level I told her I could just sit there for an entire week and be content with that news, no need to apologize about any delays!
LDH normal range at Mercy (100-190) *If you remember at the end of January it was 908 – our tip off to the fright train that was brewing inside of Christi which soon produced “lumps” out of her skull and jaw. The LDH came back at 522 ten days ago and yesterday it was 212!! I text messaged Shayne “Praise God! Nearly normal LDH, 212!” He called and jokingly said, “Well, doesn’t Dr. Maris get the award for pulling the rabbit out of his magic hat for this one??!!” Thank you, powerful prayer warriors! (And while I hate to ask, I am – she needs MORE! It’s far from a fix of any sort.)
Other counts were great too: 4.6 white (Yahoo! When I called Nurse Pat in Philly to figure out the transfusion information she said, “Tell Christi that when she gets on making white cells, she really does it well………and the G shots did the trick too!”)
ANC (Needed to be over 1,000 to stop the shots and to start the chemo again) It was 2,800! THANK YOU LORD! When Christi was told, “no more shots” her grin was the biggest I’ve seen it in weeks!!
Her platelets are down to 26. Because a sweet volunteer needs to drive all the way to Toledo to get them (and back, hee hee) today she will receive this transfusion. If she would have been in the single digits I would have pushed to have them done last night; however, this isn’t an emergency situation. As long as she receives them today she’ll be fine. THANK YOU to the American Red Cross and to blood donors everywhere for once again saving our sweetie’s life!
Finally, thank you to “Grandma” Donna and Shayla’s friends’ parents for taking care of her after school and getting her to religion and all during our hectic time yesterday!
Last night she was again in horrible pain from the “bowel situation”. I’ll be checking with some nurses today to see what kind of comfort can be provided if anything. She has been too miserable for too long. She had a restless night.
Last night just before I went to bed with Christi (and fell asleep reading to her) we received word from Dr. Maris that because her ANC is up she can start chemo on Monday; however, because her platelets are lagging the chemos he wanted to try (cabro and etoposide) will have to wait because it’s so hard on platelets. Therefore he’s going to do a five day round of Topo (but at a 50% reduced dosage because of how hard it hit her. Really scares me because I don’t know if it’ll be as effective at just ½ of the dosage she received last time.) He’ll also put cyclo/vcr with it (which she’s seen before). So I’m not real excited about the choice of chemos, but if it holds her steady while allowing her body to recharge itself for another big hit, I guess that’s the game plan!
So, I’m now frantically searching for airfare. Fares are about $500 per ticket again. I’m being really creative so we’ll see what I can book before the day is out. (last time I saved over $600 by booking our flight was a one way to Chicago with a change of planes in Cleveland (where we met Shayne and happily went home instead! I can’t check luggage that way, but I’m searching high and low putting my creativity to the test!) She will have a transfusion today and I’m hopeful (although probably too optimistic) that we’ll be in school tomorrow. If her belly situation resolves itself I think it’ll happen!
CHRISTI’S FUNNY: Yesterday while Christi was reading on the couch little Buckeye was under her blanket. I heard Christi say in a most loving voice peeking under the blanket. “Oh, Buckeye, honey. I’m so sorry. That was really bad wasn’t it? You poor little thing, come up here.” I asked her what was going on. She giggled and said, “I just tooted and Buckeye took the hit down there.”