Make-A-Wish

Ok.  So I think I may be more excited to share this than Zoë is!  Zoë has been such a brave girl and still has two more rounds of chemo to go before she is finished with this part of her treatment but she has been selected by the Make-A-Wish foundation to receive a wish!!!!  We are going to meet with the representatives from MAW in the next few weeks for an interview to see what Zoë would like for her wish.  I am so proud of her and how she has handled having to deal with having a brain tumor.  She is an inspiration to me and all those around her.  She deserves this so much!  I am so happy for her (and secretly happy for me too 'cause I get to go!). 

    Well, chemo has been delayed again due to her blood counts.  While her platelet count increased, her ANC declined.  At this point, she is considered to be neutropenic.  This means she needs to stay away from anyone who is or has been sick.  If she begins to run a temperature we have to go to the ER.  I am praying she does not run fever.  She and I both hate having to go there.  Other than that, Zoë is enjoying her summer. 
    We were glad to be able to see Alex for a day before he went to Youth for the Nations camp in Dallas.  He will be back on Friday.  Oh, how we have missed him!
    Zoë is excited about all of the July 4th events going on this weekend.  Friday Zoë has a small ceremony at the pole barn by the park in Ore City.  She will be escorted by her Papaw Tim and will get to wear her "poofy" dress.  Then, Saturday morning she will get to ride in the parade in Ore City.  She cannot wait to ride with Uncle Darrell in his barbie car.  (We love you Uncle D!!) 

Chemo pics!

Thought I would share a few pics. :)

Wonderful things happening

Wonderful things are happening for Zoë!  She has been doing VERY well with her treatment.  Her tumor is well on half the size it was when she began treatment over one year ago.  Her next MRI is scheduled for August.  There was some concern about her blood counts (specifically her ANC or Absolute Neutrophil Count) and her doctor decided to replace the antibiotic she was taking three times a week to an antibiotic breathing treatment that is taken once a month at the hospital.  She does not like the way it smells but is happy not to have to take her "nasty, purple" medicine anymore.  She recently visited Dr. Hogan, a pediactric neuro-opthamologist.  We were concerned her chemo was beginning to affect her vision but she tested 20/25 in her right eye and 20/15 in her left!  Zoë was little disappointed that she didn't need glasses but I was happy her vision has not been affected.    She will continue her treatment until the end of September or beginning of October.  Hopefully, she will not have to push back too many more treatments due to low blood counts.  Zoë is happy to be out of school for the summer but crazy excited about 1st grade!  Alex and I are looking forward to the fall as well and all of the changes it will bring.  Until next time....(I promise to update this blog before next summer!)

There and Back Again

Before I get started, I just wanted to say I know it has been a while since I have updated the blog. We have had a busy last few weeks of summer and Zoë has had her ups and downs with her chemo. After the break from Carboplatin her nausea seemed to subside. She did not have Carboplatin for a total of 3 weeks. After the 3 week break, she was given a full treatment. She seemed to handle it pretty well. She was slightly sick the first couple of days as expected but had recovered by Monday. The following Friday she was again given a full dose of chemo. Again, she did pretty well handling the treatment. Nana and Papaw Tim came down to see us that weekend and we have a fantastic time with them. Zoë, Nana, and I had a great time having a “girl’s day out”. We had lunch at a swanky bistro and then headed to the mall for a little retail therapy. Zoë had been complaining that her hair was beginning to bother her. It had been falling out in small clumps and she was tired of the hair being on everything and everywhere she went. To my surprise, she asked me if she could get a haircut and have it all cut off. By this point, she already had a substantial bald spot on the left side of her head because she likes to twirl her hair. When she realized that she could twirl it, give a little tug and pull it out, she would show everyone. That Sunday, Nana and I took her to get her hair cut at JC Penneys. We had them cut it very short, like a pixie cut. WE DID NOT HAVE HER HEAD SHAVED!!! I will try to post a couple of pics so that everyone can see her with her new ‘do! Nana and Papaw left that evening and we settled down for the rest of the week. She had a good week. When we went to doctor day, her blood counts were very low. They decided to hold off on the Carboplatin as giving it to her would cause her counts to drop even further. She was limited the following week to the house. If she was to get sick or run a fever she would have been hospitalized for a minimum of two days. We made it through the week without any problems or hospital stays! On her doctor day two weeks ago, she had a physical therapy appointment before her chemo. She had a great time “playing” with the therapist and popping bubbles with her feet. We grabbed some lunch from the hospital cafeteria (which is actually good food) and headed to her chemo appointment. Her counts were back up so the decision was made to give her a full dose of chemo. As before, she had a great week. No nausea or vomiting throughout the week. Last Friday, she was very excited to go to doctor day. Gigi and Gabby were coming with us!!! We had a good time (well, as good as it gets when receiving chemotherapy). That weekend we had a blast. We took everyone to Shoal Creek just south of Joplin to float down the creek in our tubes. Zoë took a nap while the water was calm and had a blast going over the rougher areas toward the end of our trip. While she had a great weekend, Zoë’s condition declined throughout the week. We were back to the nausea and vomiting we had seen at the beginning of June. We have tried to make her as comfortable as possible with the medicines we have but her belly still seems to always hurt. Yesterday Zoë had an ophthalmology (eye) appointment as well as chemo. She did very well at the ophthalmology appointment. The doctor said her vision is 20/20 in her right eye and 20/30 in her left. He didn’t feel the need to correct her vision at this point as it is probably due to her tumor. Her left optic nerve is a little pale. I was informed this is more than likely due to her tumor and its location. We will keep an eye on it and go back in 3 months to see if there are any changes. After lunch, Zoë was tired and didn’t feel well. She has continued to lose weight, a concern for both me and her doctors. Zoë is obviously not handling the Carboplatin very well. She has a three week break from chemo and during this time we are hoping she can start feeling better. When we return, we will discuss other possible treatment plans. Her birthday is August 4th so we are hoping she is feeling much better by then. She will have home health come out this coming Thursday to draw labs so we don’t have to go back to Kansas City just for that. If her blood counts are good then she will not have to have labs taken again until we go back to the doctor on August 12th. I know everyone is wondering when she will have another MRI done to see if the chemo is working. I am happy to say she will have one done on August 10th at noon. We are looking forward to the next few weeks of not having to go to Kansas City and Zoë is looking forward to starting back to school soon.

Switching it up!

The past couple of weeks have been hard on Zoë. She has not been responding to the side effects of her chemotherapy as expected. With Zoë’s chemotherapy we expected some nausea and vomiting the first couple of days after she goes for her treatment. We did not, however, anticipate it continuing all week until the next scheduled treatment. The side effects from her chemo have been difficult to say the least. When she started her treatment she was given Zofran for nausea. This medication usually works great for chemo patients but not for Zoë. Her oncologist, Dr. August, thought switching her to a different anti-nausea regimen would help to curb her nausea and vomiting. We have been giving her three different medications with this new regimen with the hope she would feel better. Needless to say it has not helped. Zoë has lost a little over 5.5 lbs. Although it does not sound like much, it is over 10% of her total body weight. This week we changed up her medications for nausea and vomiting again and Dr. August thought it would be prudent to withhold Carboplatin (one of the two chemo drugs she is given at the hospital). She is scheduled to not have it the next two weeks anyway. Hopefully this break will allow her to feel better and recover some of her lost body weight. In three weeks we will re-introduce Carboplatin. The hope is for the side effects to be less severe when it is resumed. She seems to be feeling slightly better this weekend. We are hopeful her tumor is shrinking as she has made slight progress with the use of her right hand.