So as you know we are here at Tulane. Bailey began chemo on Monday, August 8th. I must say it was so nice to be able to go to the beach for a short vacation before it was time to get back to our hospital routine. We went to Orange Beach and stayed at Granny Carla’s condo (Cody’s mom) and it was absolutely PERFECT! Bailey slept in everyday, we played board games, watched movies, sat and watched the waves and we just enjoyed the peacefulness of it all. In the late afternoon we would take the kids to the beach to look for crabs and build sandcastles. Despite all the jellyfish the beach was beautiful! The condo also has an indoor/outdoor pool, so during the day when Bailey couldn’t be in the sun, we would all go to the pool to enjoy the water. At night we would go eat at restaurants and on our last night there we went to The Track which is a big version of the Kart Ranch, except with more rides and games. Needless to say we all rode the go carts and that was a blast!!!! Cody, Jordan and Seth decided to do something so daring and they went on the skycoaster which takes you 160 feet in the air and then you free fall and swing to the ground…as scary as it sounds it is a rush and so much fun. I didn’t do it this year because I stayed with Bailey and took a video of them so we had proof of how brave Seth was! (Considering he is only 7 we were all very impressed that he went). Aidan on the other hand was not having any part of that and kept insisting that he should tell his brother that he didn’t think it was a good idea to go so high and then fall because someone could get hurt! Anyways we had a wonderful time! We drove home on Sunday, August 7th hermit crabs and all and unpacked then re-packed for our trip to New Orleans on Monday.
When we got to Tulane on Monday it was decided that Bailey needed to be hydrated more so chemo wouldn’t actually start until Tuesday. This round of chemo was Cytoxan, Vincristine and Irinotecan. I will just say it is horrible!!!!!! My poor little girl got pretty sick on this round. She began with nausea almost immediately followed by vomitting, diarrehea, etc. To help with the nausea and vomitting, Dr. Kanter put her on steroids and that only added to the list of issues even though it did help with the vomitting. Bailey became very emotional about EVERYTHING!!! She was looking at pictures on my phone of her cats at home and started crying uncontrollablly saying that she needed to be home with them because she just knew they missed her. Keep in mind the day before we left she was making us kick them out of her room becuase they were annoying and all they did was aggravate her…oh the joys of steroids! On top of all that, due to the amount of Cytoxan she was getting, it was mandatory that she had to urinate every hour. Well if you could only imagine how hard it would be for anyone to do that on a normal basis, try imagining getting an emotional, irritated, exhausted 8 year old to do that. I will tell you that neither of us slept for the first four days we were here! Mimi was also with us but I think exhaustion took over because fortunately at night she never heard us in the midst of all the commotion. All in all chemo was only for 5 days then thank GOD it was over.
Bailey’s counts have now bottomed out and we are playing the wonderful waiting game to see when they decide to recover. She has started her Neupogen shots to help the white counts recover and has been given blood and platelet transfusions to help with those. Fortuntately the red counts took the transfusions and gave her a higher red blood count but we were not so fortunate with the platelets and of course it is too soon to even think the white counts would be recovered by now. Dr. Kanter did tell us that it is not uncommon for the platelets to stay as low as they are for awhile especially after receiving this high dose of chemo. Her plan is to wait three weeks to let Bailey’s body try to recover on it’s own and if it does not then she will give her a stem cell rescue from our reserve. I am praying that her body recovers on it’s own so we do not have to use up her stem cells as those are very valuable and we want them to be available in the future should she relapse again.
All in all Bailey is hanging in there and handling things like a champ as usual. She spends her days sleeping until at least noon and then finding ways to cause trouble with her nurses the rest of the day. She is still smiling as usual and making us laugh non-stop. The things my little girl comes up with never cease to amaze me. The other night she decided that Mimi would lay with her to fall asleep…well needles to say an hour later we are all still wide awake laughing at her. She loves when Mimi lays with her becasue she gets really close to her face and just stares at her when mom is trying to sleep…it is the funniest thing. Of course Mimi finds it funny the first couple of times but after about 10 minutes or so has enough. So after torturing Mimi in that way, Bailey proceeds to say, “Mimi you are getting old you know that right?” and Mom says “Bailey what makes you say that?” Bailey said ” Uh have you looked in the mirror lately, your skin is old” and Mom says” No my skin is not old” then Bailey says in her sassy little way “Ok whatever you say but it’s old”….of course we cracked up. The next night she convinces Mimi to let her blowdry her hair. Well Bailey thinks it is so funny to put the blow dryer right on your scalp because of course it hurts and the person will say ouch. Then once she pulls that stunt she will start drying your hair in a manner than happens to tangle all of your hair (especially when your hair is as long as Mimi’s…I have learned my lessons long ago to politely say no thank you when she offers her help in drying my hair). So Mimi finally had enough of that as well and had to brush all the tangles out because of the big mess Bailey had created. So Bailey then convinces her to sit down and let her “fix” her hair. Finally mom gives in and sits in front of Bailey with her back to Bailey and Bailey looks at me and says “Whatever will we do to fix this frizzy hair freak”…well that’s all it took because mom and I were laughing uncontrollably to the point we were crying because whatever Bailey thinks somehow finds its way to her mouth before anyone can stop it and you never know what to expect…(not sure where she gets that from but she definitely keeps us laughing)!
So today Bailey had a CT scan because she has been having headaches everyday for the past 5 days. Dr.Kanter is not worried at all considering we just did scans four weeks ago, but being the wonderful doctor she is knew that a quick CT Scan would put my mind at ease so she ordered one. We did not get the results yet but I will expect nothing but clear scans and will chalk these headaches up to the various medications topped with her body’s exhaustion from chemo. Regardless extra prayers wouldn’t hurt any
I will keep you all updated on her progress and I ask that you continue to pray for her. Nothing is impossible for God and there is no doubt in my mind that he can heal my little girl. I will believe in a miracle and have faith that it will come to pass in HIS timing. Until then I ask for prayers to continue carrying us on this long journey!