Looking Ahead...

It has been 7 months since Rylee was diagnosed with Leukemia. Today at treatment we got a date. The first week of December 2010. That is when Rylee's treatment will be complete! Yay!

I am just overcome with gratitude right now. In the beginning, I wondered how we were honestly going to do this. How we would get through it. And now, I see the light.

In so many ways, it's been the best of times and the worst of times. I have never witnessed so much goodness in my whole life. I was thinking about everyone who has helped us, prayed for us, encouraged or supported us. We have had endless meals provided, gifts sent, services offered and heartfelt kindness. I am just so grateful for the blessings that have been poured out upon us. They have totally outweighed our trial. Thank you-everyone for doing so much for us.

Too many people give me credit for the way we've gotten through this. While I am humbled by your kindness, the truth is, I have been given a strength beyond my own. I do not take credit for it. I often think of the poem Footprints and realize that I too have been carried during this difficult time. I am just eternally thankful that we have an end in sight. And it's not because I can't wait to get our life back. We'll never get it back, things will never be the same. This has changed us-for the better. We're just anxious for the opportunity to look ahead and move forward with life in a whole new perspective. Cherishing every day. Grateful to have Rylee here with us.

A few weeks ago, we received some really good news. It has been one of the many tender mercies we have received through this journey. On May 15, Rylee is scheduled for a surgery at Primary Children's that will replace her central line with a port. Initially we were told that it wouldn't ever really be a possibility because of Rylee's age. In the past they didn't like inserting them on anyone under the age of 4. Thank goodness for modern medicine! I am overjoyed at this news. I know that it probably means nothing to most of you, but for us, this relieves so much work, worry and limitations.

Right now, Rylee has a central line, which is essentially a cord that sits on the outside of her chest. While it's a convenient little thing for blood draws, chemo injections and the other ins and outs of her body, it is high maintenance. I have to "flush" it with saline and heparin once a day. It has to stay covered with a dressing at all times. This dressing has to be changed weekly or more if it gets wet or dirty. I have to cover it will Press N Seal wrap everyday for a bath. Rylee cannot submerge in water with it- can't swim, lay on her belly in the tub, can only have water about belly button high or lower. It has already gotten broken once. It is stressful to let her play with other kids unattended for fear that they might pull on it or pull it out. It's a straight connection to her heart, we're always at risk for it getting infected, the dressings have caused some nasty rashes, etc. etc. To say the least, it's a pain that we've just gotten used to. Anyway, the port goes under the skin, so there is absolutely NO daily or weekly maintenance with this. She can swim, play at ease, bath normally and we will no longer be in need of ANY medical supplies (we currently have a huge bag full). It's just a huge relief that eliminates a lot of burdens for me. I cannot wait to fill our jetted tub to the brim, add some bubbles and let Rylee soak it up. Such a simple pleasure that is much deserved. I also feel like buying her an adorable new swimming suit and then hit up every swimming hole we can get to this summer-just because she CAN.

It just seems like life is getting easier...little by little. For one thing, Jace is now able to just do speech therapy once a week instead of twice, (since he's made such good progress- yay Jace). All of our 6 week check ups are behind us. Tax season is over and we're into relaxed summer hours for Jus (makes for lots of quality family time). Jace's preschool & speech are both done at the end of the month and sunshine and summertime are right around the corner.

The other good news we got is that we don't have to have home health come anymore. We've been having a nurse come once a week. (She didn't really do much, but it was in our orders from Primary Children's to have one). Eliminating 4 appointments per month makes a huge difference. It was just starting to feel like Rylee never got a break. The maintenance phase is proving to be much more low-key. Going to the Dr. once a month feels much better than weekly or daily.

Basically the next year and a half will go like this. Chemo/office visit: once a month. Spinal taps: Once every three months. {At home meds}. Steroid (Dexamethisone): 2 times/day for 5 days/month. Oral Methotrexate: Once per week. Septra: twice a day every Mon/Tues. Mercaptopurine: Once a day. That's not so bad.

It is really starting to feel like we're living with cancer, instead of cancer controlling our lives. That feels good.