Wednesday, July 6, 2011

Festivals and Fundraisers.

Even with the crazy schedule this week, we have managed to keep a pretty normal routine going and have some good old fashioned family fun around town. Danvers has a family festival that runs for a full week ending with the 4th of July festivities. We went to a few of these events including a concert and hot dog dinner, a street fair downtown, a ham and bean supper, and the horribles parade. It was so much fun, and Saoirse enjoyed every minute.
Saoirse has many appointments scheduled, as her progress is being evaluated between cycles 2 and 3 of her chemo. She also had her apheresis appointment to collect her stem cells to be used for her bone marrow transplant. To prepare for the procedure, we injected Saoirse with double her normal dose of her white cell boosting medicine to encourage extra white cell production. She did ok with this, although she had more bone pain and had to take pain medicine more frequently. Last Friday we went into clinic to meet with the apheresis coordinator and find out exactly what was going to happen. She explained what the procedure would be (she would be hooked up to a machine that pumps her blood out, separates out white cells, and pumps the rest back in), and what she needed to achieve in her labs so that we could start collecting. There are so many numbers involved, it's hard to remember what everything was, but they were checking her labs frequently and would let us know when she was ready for collection. After a busy holiday weekend, we found out Monday that she was ready for her collection. We were scheduled to go in Tuesday morning for an all day process. The morning would be labs, and the afternoon would be the collection. It was a long day, but we managed to get through it. My mum and I battled to keep Saoirse entertained as she had to be hooked up to a very large machine for four and a half hours in the afternoon. This is the biggest challenge of the process. A one year old doesn't understand that she has to stay in bed because she's connected to a machine. She just understands that she's bored and wants to go somewhere else. It took a lot of books and toys and some singing, but we managed to keep her entertained for most of the afternoon. They were even able to collect enough cells in that one session, so we didn't have to go back for a second round. This was great, as I wasn't sure what we were going to do to entertain her on a second day. 
Friday Saoirse is going to be scanned again to see what the progress looks like inside. We know her tumors have been shrinking, as she has much less swelling and her belly is not as distended, but we won't know exactly how much has improved until we see what's going on on the inside. It's a little nerve racking waiting for the results, but the wait will be worth it. I will keep you all posted with the results of all Saoirse's tests, and with her progress. 
Next Monday we will be her next round of chemo. This cycle has to be inpatient as they have to monitor how she responds to the new drugs. Luckily, it is only a 3 day cycle. Hopefully she will respond well and we won't have to stay later into the week. It would be nice if she could come home right away so we can do some more fun summery things. 
In addition to the doctor appointments, we have a full social schedule as well. Last week we spent a lot of time at festivals, and family and friend's barbecues. This week we have play dates, a birthday party, and my birthday to celebrate. Next week we have a going away party for some friends, and a second fundraiser event that my best friend has coordinated for us. The first annual HOOPS TO HELP charity basketball tournament and picnic is being held in Arlington, MA and will be a day of great fun. We really appreciate all the help and the love that we are receiving from friends, family and even perfect strangers. It's amazing the outpouring of support we have experienced. We are truly in awe. (For more info on the event look here:
We have also set up a donation page for our family through FirstGiving and the Ishan Gala Foundation. This page will accept credit card donations of any size, and since it is through a not for profit organization, is completely tax deductible. The money is collected by the foundation, and we are reimbursed for living and medical expenses while Saoirse is going through treatment. The Gala foundation has been truly wonderful with us, awarding us a $1000 dollar grant to help with our expenses. This site will also help to help us with the increasing cost of Saoirse's treatments. To see our page, look here:
On my side of the fence, things are going well. I have two more treatments to go, and am very excited to be finishing up this chapter of my disease. Right after my last treatment, on July 22nd, I will be rescanned to make sure that the cancer is gone. It will be tense waiting for the test results, but I should not have to wait long, as I will be rescanned around the 25th, and will be receiving the results on the 27th. I'm sure it will be a long few days though. Hopefully I'll find something to keep me busy. The thing I'm looking forward to the most? - a celebratory sushi dinner! I can't wait!


  1. Hi Kezia-
    My husband and I just read about your family on the Channel 5 site. We were truly touched, and will be praying for you both. Please let us know if there's anything we can do!

    Mike and Ally Simons

  2. Mike and Kezia,
    I run a preschool in Georgetown and 8 yrs ago, one of our students was diagnosed w/Neuroblastoma and continues his battle to this day. In his honor we are hosting the Children's Hospital Bloodmobile TOMORROW, July 14th from 2 - 7 pm at 22 Pleasant Street. When I heard your story, I was touched and would love to help you. I know that Saoirse probably makes frequent visits to the blood bank for both blood and platelets. I know that she and Ryan sadly have many peers in need of blood products as well and I want to raise awareness of this. I planned the drive to make it easier for people on the North Shore to donate blood directly to Children's. This is VERY short notice, but could you help to spread the word. I can be contacted at for more information about the drive. I'd love to chat when you have some time about other ways that I could possibly help. I'm so sorry for the burden that you have been handed. You are in my thoughts...