Keep Your Head Above Water

Again, I feel the need to apologize for the lag between posts. Thankfully it's nothing really exciting, although Benjamin did have a very short stint in the hospital a couple of weeks ago with a fever. Turned out to be not much of anything which is an enormous blessing! Through all of journey this far, God's grace has constantly amazed me! Things could be so much worse than they are and for that I am very thankful!

I feel the need to explain today's post, because it is a topic that has been close to my heart for months now. I meet so many Chemo Strong families at clinic and on Facebook. Families that are doing the best they can to make it through the diseases that have invaded their little ones bodies. It is both heartbreaking and amazingly uplifting to see the strength of my fellow warriors!

The phrase "99 Year Lease" comes from a conversation I had with a dear friend in the hospital shortly before Benjamin was diagnosed. It refers to the assumption that most parents have that we are entitled to the right to enjoy the children that God gives us for years on end.

The simple truth of the matter is that in all reality no one knows for sure how long of a lease we have been given by God to enjoy our children. We hope and pray and do all that is in our power to extend the length of time we are given, but in the end, we are forced to acknowledge that only God knows our time and our children's time here on earth. Some we are able to enjoy for years on end, but sometimes God has different plans.

Please do not misunderstand...I am not making lite of the pain that is involved when we face the loss of a young one. Rather it is my intention to remind all of my fellow parents that it is important that we remember that we are not necessarily entitled to a "99 year lease" and should do our best to cherish whatever amount of time we are given. It's also important to remind ourselves that ultimately it is God's decision as to the amount of time on our own lives.

I say all this not to depress, but as a reminder of the preciousness of our time with our children. After all, even if we do get a full 99 year lease, they are only little for so long. So take the time to hug, kiss, squeeze, tickle and listen, because those are the truly important things. The other things can wait. And to my fellow Chemo warriors I will add this...no matter how bad the storm, God is still there and he still loves you and your little warrior.

On a personal note, I do ask that you continue to pray for Benjamin. So far things look very good for the little guy and he has continued to stay very healthy. We have an MRI scheduled for Monday, so I pray to have good news to relay Tuesday or Wednesday!

My oh my have we been busy! Sometimes there is so much going on that it's hard to keep my head straight!

First off, Benjamin update...
Things have been going pretty well with the little dude. Since his counts were so good, we were released from having to go to clinic this past week. However, Benjamin had other plans. He ran a 103 fever on Wednesday and we headed over to the ER. Since his heart rate was still pretty high even after the fever broke, the ER doctor went ahead and admitted us to the hospital. His heart rate was still high in the morning, but the antibiotics had done their magic (no more fever!), and the little guy was released by the Oncologist. Through all of this I am beginning to suspect that Benjamin is a little too fond of the nursing staff at the Children's Medical Center! Now if I could just figure out how he's managing to fake these fevers, I could call his bluff!! (Kidding...mostly ;) We go in on Tuesday for another round of chemo. Hopefully we will be able to find out when he will have his next scan scheduled. The last time I talked to the clinic nurse she said that they were pushing back his scan until after Benjamin has two more courses of chemo. Obviously, we are very anxious to hear whether the tumors have continued to shrink and don't want to wait much longer for his scans!

Update on Cookies for a Cause...
Wow!! Wow!! WOW!! I am so amazed at the phenomenal amount of support I have gotten for this!! Thanks to everyone's amazing support the girls have been able to collect enough donations for 80 boxes of cookies in only ONE WEEK!! Since we are headed over to the clinic on Tuesday anyway, the girls are going to go with me and hand out order forms for the families. They are so excited about this! I would like to thank everyone who helped support us in this event. Your donation means so much to both the Clan and the families who are undergoing treatment! You guys ROCK!!

Just a quick update.  Autumn ran a low grade fever all night, so I took her to the doctor today.  Turns out she has Strep. throat.  I am soooo glad I separated her from the other kiddos last night.  Hopefully I caught it before she infected anyone else.  I would have been happier if it was an ear infection, but at least it is bacterial and can easily be treated with antibiotics.  Phew!  Now all I have to do is get to the store to stock up on ice cream, popsicles and antibiotics.  Please pray that Benjamin doesn't get it because I hate to have him on a hefty course of antibiotics again. 

Good evening! I hope everyone is having a fantastic 2010!

Update on the family...Benjamin continues to do well with his treatments.  His counts are doing very well, and the nurse said that we don't need to come in next week for counts!  That's really nice.  However, they are moving his scans back until he has had two more treatments.  I am not very happy about that, and I intend to find out why the scans are being moved.   Unfortunately Autumn is not feeling well today.  She started feeling bad after lunch at school and then started to run a fever.  I've moved her sister into Benjamin's room in an attempt to quarantine her.  Only time will tell whether I can keep her from infecting her siblings. :(

Sooo, I've got you guys wondering about the title already! Hehehe...good sign!

Since we've been diagnosed, it's one of the questions we hear most often. "What can we do?"  Over the months we have had an amazing outpouring of kind acts and I thought that I would mention some of the things that have made our journey a little easier. 

It's not always the "big things" that need to be done. A lot of time simple gestures mean a lot during the difficult days of treatment. I've gone ahead and made a small list of things that have made a difference to our family. If you know of a family going through cancer treatment, please, PLEASE take the time to find out what you can do to help! I promise that you will make a big difference.

• Send a card and write something personal and uplifting.  There are several cards that I keep in my "precious" (my folder that has all of Benjmain's medical information and treatment schedule).  I take them out and re-read them when I'm feeling down.  It's nice to have a physical reminder that we are not alone.
• In families treatment is often most difficult on the siblings.  Make a point of sending something *just for them* so they know that they are loved and not forgotten.  It doesn't have to be anything big...a  card with a personal note or a small gift...just something to let them know that they matter as much as their sibling.
• Offer to make a meal on treatment days.  It's amazing how stressful chemo days can be, not to mention if there are other tests involved.  Not having to come home and cook dinner is a nice break.  Be sure to check first whether any dietary limitations need to be considered.
  
• Call and ask how things are going.  Sometimes its nice to hear a friendly voice on the other end of the line.

2009 was quite a year for our household! You ever look back on a year and go "Wow...you know, that isn't how I thought that was going to turn out."? That would be an understatement for our Clan this past year!

Obviously, the biggest change to our family happened in late August when Benjamin was diagnosed with Langerhans Cell Histiocytosis shortly after his 2nd birthday. The entire family has worked through the torrential flood of emotional issues associated with such a serious diagnosis. Through it all...the ups, the downs and the just downright bad and ugly...I have been amazed and proud of my family.

It takes a couple of amazing girls to go through all that Genevieve and Autumn have! Their courage and love have been a source of strength to me on countless occasions! Their love for their brother is amazing to see in action...they truly are SuperSibs!!

That brings me to my husband Ken. My rock in the hard times, my loving companion in the good times, and my comedian when things are unbearable. Sorry ladies, but if you were thinking about nominating your husband for Man of the Year I'm afraid my husband has got that one locked up!

I think perhaps the most amazing member of our family during this time has been Benjamin! His courage and patience is truly humbling to watch considering all that he has been through in 2009! Our family is very blessed to have such a special little guy as our Minamin!

I have also been amazed by the tremendous acts of love that have been extended to our family this year. I'm not sure we would have gotten through the shock of diagnosis and the beginning of our journey without the support and love of our church family and our friends. You guys have been so amazing and wonderful, and have helped me and my Clan more than you possibly could know! I am really lucky to have such a fantastic support group!

I'd also like to say how impressed I am by the mind blowing amount of prayer support we have received from friends, family and even people we don't know! I have been really amazed by how many different people all over the United States, and even the world have been sending positive thoughts and prayer our way! Thank you so much for your support!

It's true, 2009 was in some ways a very difficult year for our family, but it was also one amazing year. We have learned so much this past year, and it is that knowledge and all the love shown to us that gives this Clan the strength to say "Bring it on 2010!"