Today was Caitlyn's last day of radiation.
When you have big days in life it is important to dress for the occasion, so Caitlyn decided to wear her best dress and tiara to her last appointment. She caused quite the excitement at the hospital. She was a celebrity; and we were the paparazzi! See the photos at:
www.caitlynchurak.com/indexfiles/photo2.htm
For the past six weeks, Kara (and grandma Sharon or Dad and sometimes the boys) have been driving 2 hour a day to and from Palatine to Children's Memorial / Northwestern Memorial hospital, so they are all happy as well that radiation is coming to an end.
Please keep Caitlyn in your prayers, as she begins the next step of her treatment plan. Since this journey began, the Churaks have made some new friends. One of them is Chet Hammack. He is the grandfather of Aidan; also diagnosed with brain stem glioma. Aidan's site is: www.whynotaidan.com . Although the families have not met; Mr Hammack has responded to questions via email and been a support to the Churak family.
Kara asked that I share this email with all of you. She is posting this email so if other families are wondering what to expect when radiation ends they have an idea. Doctors tell you; but families that have been there are the real experts. Read below and remember to keep Caitlyn, Aidan, and all the other BSG children in your prayers!
--Margaret Donahue (friend of Churak family)
===================================================Kara,
Feeling nervous about the radiation treatments coming to an end is very very common and we too experienced it. Upon treatments ending the first thing we thought is… the treatments had made the situation so much better, and now we are doing nothing to help the situation at all. Well, we were wrong and we were concerned about nothing. Eventually we were told by the doctors that the radiation continues to do it’s thing for up to 6 to 8 weeks after the treatments had ended. We were also told not to get overly concerned if some symptoms reappear or actually worsen slightly during this 6 to 8 week period. Apparently the radiation actually causes swelling of the pons, and this effect continues for some time after treatments have ended. Fortunately Aidan never had any worsening of symptoms so our worries were diminished more then most. But, being the worry warts we are, we then begin to worry that he was not having symptoms, so the pons must not be swelling, and radiation must not be doing what it was intended to do. Can see where I am headed with this? The fact you love Caitlyn means you will most probably worry about her and her cancer from now on. The goods news is that the periods of time that you will not be worrying will grown in length, and the length of the times your are actively worrying will shorten. You can trust me on this because I have been there, and a year and three months later, I worry for Aidan each and everyday, but each day is better then the previous.
We were told a very important thing by Aidan’s Nurse Practitioner and it is something that may help you during the times the worries start to take over. Cancer symptoms do NOT come and go and remain constant at all times. The symptoms are due to the pressure the pons is putting upon the rest of the brain and this pressure does not come and go. If Caitlyn coughs it is most likely NOT because of the cancer, but it is because something has tickled her throat. If Caitlyn appears slightly more wobbly in the evening it is most likely NOT because of the cancer, but it is because she is tired and needs some rest. When you begin to get nervous, step back, take a deep breath, and consciously survey the situation and then determine if your nervousness if based upon sound reasoning. You are Caitlyn’s Mom, you will know whether your worries are for good reason or not.
Since I have already provided you a ton of advice you have not even asked for, I guess I will let my fatherly instincts provide you with one more thing… I don’t know you and I obviously have no idea what your beliefs are, but I have a story for you that you may find very hard to believe, but I will give you my word every bit of it is true….
Within a couple weeks of Aidan being diagnosed my wife was approached by a man at a fundraiser. She did not know this man and at first was a bit uncomfortable. The stranger nervously introduced himself and then quietly reached into his wallet and handed my wife a very small, well worn piece of a newspaper. On this newspaper clipping was the following:
Say this prayer nine times a day for nine days and then publish. You will then be provided your miracle.
May the sacred heart of Jesus be adored, glorified, loved, and preserved throughout the world now and forever.
Oh sacred heart of Jesus, pray for me.
Saint Jude worker of miracles, pray for me.
Saint Jude helper of the helpless, pray for me.
Well as you would have guessed, that day I started saying this prayer. I simply exchanged “pray for me” and added “pray for Aidan”. Well shortly thereafter Aidan started to make the progress that you see today. He has defied tremendous odds and his doctors are in awe as to how well he is doing. Well today is your lucky day because I am your stranger and I am giving you this prayer. You will not be saying it alone, because I have already exchanged “pray for Aidan” with “pray for Aidan, Caitlyn, and all other BSG children”.
You and Caitlyn are in our prayers,
Chet “Papa” Hammack
