Sorry for the long break I took from posting, I’m back now.
We had a great Off Treatment Party at Great Wolf Lodge back in April. Zach, family and friends had a fun filled weekend staying at the Lodge and playing in the indoor water park all day. Zach was so happy to be running around playing, laughing, giggling and have the time of his life. It was so great to see him so happy and we saw the first signs of his hair staring to grow back. It was a great way to celebrate Zach being off treatment.
Disney World was AMAZING!!!!! Make-A-Wish (northtexas.wish.org) and Give Kids the World (www.gktw.org) made our trip full of memories we will never forget! GKTW property, were Zach and family stayed was incredible. It’s a property that helps create memories for children with serious illness by bringing them to a special resort in Orlando. The housing, eating places, entertainment & even the trash cans….all of it was built in such a way that it makes your stay magical. The playground was a life size “Candy Land” board game, including the gum drop & candy cane forest….the turf is decorated to be a life size Candy Land game; it was unforgettable to play with Zach and Aaron here. The swimming pool and splash park, the “Ice Cream Palace” that is open for every meal, the Safari themed Theater, the merry-go round, the train station, the clown trash cans that sucked in your trash when your hand got close to them…all of it was such a hit with the boys. We had “Christmas” one night and got to go see Santa and pick out presents, one of Santa’s Elf read to us and autographed a book of choice for Zach, we decorated cookies, had cotton candy, went on a horse drawn carriage ride around the property, decorated Zach’s “Star” that will be permanently placed on the Castle’s ceiling, I could go on and on. Sound like an amazing place? It was!
Disney World was UNFORGETTABLE as well! We had a special pass to not wait in any lines and boy can I tell you this made the trip so great for Zach. He was able to do everything in one park in one day & really make some special memories meeting all the characters, riding all the rides, and seeing some great shows. Favorite show was “Nemo the Musical”, favorite ride was Winnie the Pooh & Peter Pan, favorite characters to meet was Buzz & Woody, and by far favorite memory for Jennifer was the “Wishes” fireworks display. It was all about how each wish is special and each person or child should dream big and wish big. Jennifer said, “As I held Zach in my arms throughout the display I thought about all the hopes and dreams I have for him and Aaron, to grow old and marry. It brought back the hope that it might happen for Zach.” Aaron felt special as well as he was able to ride the big rides with the adults (and might I remind you we did not wait in any 45min. long lines!). We were a large party of 11, all family to Zach from both his mom and dad’s sides…all coming together to making a life long memory of Zach having the time of his life. It was so special. Thank you Make-A-Wish and GKTW!!! Pictures to follow soon!
Exactly 1 Year ago today, June 1st 2009, our journey with cancer began. It’s crazy to think about all that has changed/gone on in 1 year. I know it’s cliché to say but in some ways it feels like a long time ago and in others the memories of those first 2 weeks are so vivid that it seems like only yesterday.
How is Zach doing? A common question I get almost daily that I will do my best to answer. He is full of new found energy, smiles & laughter and is growing a new head of hair…all of which we are so greatful for! He still has a low immune system which has prevented him from going back to completely normal life; he is very susceptible to illness & b/c he still has his port he has to go the hospital for fevers. He still has his feeding tube in but we hope to get that out very soon; his port will stay in for another 3-6 months to see that there is no evidence of disease recurrence. Taking the port out is a lot easier than putting it back in. He is still in physical therephy for walking/balance; he is better but still falls frequently. He is progressing in verbal and he has grown 1 inch!!! After our last set of scans in March, the doctors called us back a few weeks later and said they did further research and want to keep looking/testing to see if they find any active cancer cells in Zach’s body. We agreed to keep looking, even though the last scans showed clear, b/c we have learned scans/MRI’s/even PET scans are not 100% accurate and b/c Zach has an aggressive cancer that comes back after the initial treatment a high percentage of the time. So, we did some CT scans about a month ago (I know I know…I should have posted) to see where, if any blood flow was going into the tumor. Blood flow into the tumor can be an indicator of blood feeding the tumor which is a sign of activity in there. They wanted to see this before they did a biopsy of the tumor. Zach’s tumor in his abdomen is big so the CT will give them a better understanding/accuracy of where to biopsy to check for active cancer cells. The biopsy will not be full proof but it will give us another way to check for activity in the tumor. They will do more scans before the biopsy, the scans are scheduled for Tuesday, June 8th followed by a Doctors appt on June 9th with the results. As long as the scans are unchanged since March, then they will proceed with the biopsy which is a surgery for Zach. We are being so aggressive in continuing to look for active cancers cells b/c of the high rate of return for Zach’s specific type of cancer. During the trip next week they were given tickets to the Rangers Game on Tuesday night from the Starlight Foundation (Thanks!) and they are staying at the Ronald McDonald House in Dallas which continues to be a huge blessing.
Overall, my heart is so grateful for more time with Zach. I cherish each day we have with him. We know the odds of people that relapse with Rhabdomyosarcoma, but our Hope is not found in these statistics…our Hope is found in Jesus..the author and sustainer of life.
I ask for your continues prayers, specifically for next week as we move forward with all the testing. Please pray for the doctors, specifically the ones reading the scans. Pray for our hearts that they are centered on Jesus & Truth. Pray that we would rest in His peace, not in fear of the test results. I’ll be in touch next week. Pray for John and Jennifer and they are struggling with “scanziety” and feeling nervous about next week.