So it has been only 3 weeks since I last updated but so much has happened…Needless to say we were finally able to go home! Bailey’s counts improved and we were able to fly home on July 6th. It felt so good driving up to our house. Hard to believe you could miss home so much but when you are away for two months you begin to miss even the little things… like the smell of your house for one. So we were able to stay home for 9 days before Bailey had to start her next round of chemo at Tulane. She was admitted on Friday, July 15th and began the low dose chemo of irinotecan and temozolomide. One chemo went through her iv for an hour a day and the other was two pills that she took by mouth making this definitely one of the easiest rounds of chemo she has ever had. It was a 5 day regiment and by Tuesday, July 19th we were able to go home. While at Tulane we did repeat her CT scan which came back clear as well as an MRI of her brain and her spine, which I am still waiting to get the results on. Unfortunatley her MRI did not come back as clear as the CT scan so her oncologist wants to compare it to the last MRI taken in New York before giving the final results. Sometimes residual spots from the original tumor show up and have to be ruled out by comparing against other scans, so as of now there is nothing to worry about but I will know for sure by next week as her oncologist is on vacation this week.
So in the meantime our time at home has been wonderful. Bailey is still feeling tired from chemo but other than that she is taking full advantage of what is left of her summer. She sleeps until noon or later everyday and spends her days torturing our cats or making mom, Seth and Aidan play school or whatever else she can think of. We have gone to her favorite restaurants and even took a trip to the movies to see Zookeeper (which was hilarious to those of you who haven’t seen it). She also shaved Cody’s head so she didn’t have to be the only bald person in our house (well that is the guilt trip she used on him anyways although he was more than happy to have a matching hair do LOL). We are going on vacation to the beach next week and couldn’t be happier about that! Definitely could use some down time just relaxing and enjoying each other’s company. Her next round of chemo begins on August 8th and it will be another round of high dose chemo from what the doctor’s are discussing, just not sure which high dose.
I ask you to pray with me that this last round of chemo will do the trick and Bailey will be able to start her 3f8 treatments again. There is nothing too big for God and I know that if we ask anything in His name He will hear and answer our prayers. My little girl has such a positive attitude and her spirit is amazing. She has a smile that can light up a room and a personality to match. Not a day goes by that I don’t thank God for giving me her to me. I know that she gets her strength from Him and He keeps her close….and that is where I find comfort in peace. I will not say that I don’t have moments of weakness where I break down because I do…I am human and she is my little girl, but I quickly remember who is in control and turn it all over to HIM. I am here to be her mommie and that is exactly what I will do each and every day to the best of my ability.
***P.S for those of you who haven’t heard Cody and I are engaged and we are getting married on September 24th!!! He proposed on July 9th which was absolutely perfect! Not only is that the twins birthday but it was also our one year anniversary! Bailey and I are so blessed that God brought he and the boys into our life. Our life truly gets better all the time…we have so much to be thankful for!
Poor Princess LOL
WEll obviously we have had a pretty busy month! Chemo started on June 7th and ended on June 11th…thank God that cycle of chemo is over. My poor little girl had a very rough time with that one. Needless to say we are still inpatient waiting for her counts to recover. She did however catch C diff her second day of chemo. I was not a happy camper about that becuase it was passed on from a member of the staff but all in all she is clear of that now but it did not help matters for her. SHe was fighting the chemo as well as that infection which did not make things easy for her. At one point she was literally throwing up every 30 minutes and had severe diarrehea at least 10 – 15 times a day. Not fun for anyone!!!!
I am happy to say that although her counts stayed at zero from June 12th until this past Monday, June 27th, they are on the way up now. On Wednesday, June 22nd, after three days of me arguing with doctors, they finally increased her neupogen from 300 micrograms to 780! Needless to say after a few days of getting the double dosages her white blood count increased to .1 …still not a great jump but an improvement all the same. This past Monday her doctor also added the Leukine shot along with the neupogen to see if that would help speed things along and thankfully it did. After her second day on both of the injections her counts started coming up! Although her counts have come up they are still not high enough for us to fly home. Her ANC must be at .5 and yesterday it had just increased to .1 so we still have a few days to go. Her white counts are however at .3! Bailey has also lost alot of weight since she was admitted and had not eaten since June 10th, but thankfully day before yesterday she started asking to eat…an apple but still in all she was asking! I had been forcing her to try to put something in her stomach as they doctors wanted to start her on tpn (IV nutrition) which I am strongly against as it is very hard on the liver and given the recent relapse near the liver I did not feel that this would be good for her.
So I have to share something really funny with you all…when I told Bailey that they wanted to start the tpn and that if they did we could potentially be in here longer because that may cause additional problems, etc she was determine to make herself eat. So she asked to eat an apple which I was more than happy to give her even though I had to walk 5 blocks to buy 2 apples that cost $3.00!!! LOL yes things are very expensive in NY! Anyways she ate two slices of the apple and said she was full. Well later on that day I was eating peanut butter with crackers (one of my favorite snacks) and she kept watching me eat. So I asked her if she would like some to which of course she said no. THen a few minutes later she said mom give me that knife and she grabbed the peanut butter jar and started eating the peanut butter off of the knife…so of course I was so happy and told her that it was so great that she was eating peanut butter because it had lots of protein that would help her body to recover, etc. etc. Well the next morning when the nurse came in to tell us the results of her labs, Bailey’s white counts had increased to .1…so needless to say Bailey looks at me with the biggest eyes and the biggest smile and says “MOM it worked it worked…the peanut butter worked…I am eating the rest of that jar today”…let’s just say we had the best laugh out of her theory! That child is something else!
Another funny story you all might get a kick out of….Bailey’s hair obviously was falling out because of the chemo so she was getting aggravated because everymorning when she would wake up it was all over her pillow, her clothes, etc. So Bailey asked me to go buy some clippers so I could just shave the rest off and so I did. Well the clippers only get so close to the head so she still had a little stuble as I call it. Well all week long she has been pulling the little stuble out and even made me pull some with my tweezers because it was too itchy. AS you can imagine we were not making much progress as the human head has millions of individual hairs. I know you are all probably thinking that must hurt, but it doesn’t. The hair stops growing the roots become dead so the hair is litterally just in the scalp and nothing is holding it. So yesterday I told Bailey that I could maybe put some tape on her head and see if we could get more out that way or if I had a lint roller I could maybe get more off. WEll being the silly child BAiley is, she asks the child life department if they had a lint roller she could borrow and when they brought it to her she said ok Mom lint roll my head LOL! So the child life worker was so amused with this ideas she decided to help me…so we spent about 10 minutes with strips from the lint roller giving Bailey what looked like a good waxing…and I am proud to report she has the smoothest little bald head you ever did see!
WEll now that I feel like I have written a book…I will go for now. Pray that her counts continue to rise and we get to go home soon. We really want to be home. Our 10 day trip has turned into a 2 month trip and we are very lonesome! THanks again for all the prayers and support! I know God hears each and everyone of us…there is no doubt in my mind that HE can heal my little girl and make her healthy once again!
Also keep all of the little cancer patients in your prayers….during our stay three of our friends from the Ronald McDonald House have passed away. It is so hard to see these little kids who fight so hard each and every day not make it. I pray that I never have to feel what those parents are going through as I can’t even imagine the emptiness. I know that there is a reason for everything and God has a plan for each and everyone, but it doesn’t make losing them any easier. Pray that a cure will be found and no little child will have to endure this pain ever again! God is able and miracles happen every day….you just have to believe!