and what’s *NOT* going on with us
316 Days to Go
So, not much has been going on with us since Kendrie’s doctor’s visit last week. I don’t think I mentioned in her journal that once again, for the 5th month (out of six) since we started long-term maintenance, her counts were higher than they are supposed to be. After the first three months of high counts, they increased one of her medications. Counts went down for one month …. Then right back up for the last two months. So now they’ve increased another of her medications. What a little over-achiever she is. She’s on 125 percent of chemo for her height and weight. Our online group has a new term for kids like Kendrie: they’re “Downeying” … as in, they can process pharmaceuticals faster than Robert Downey Jr. We have to take her in to the base lab for a local blood draw next week to see if the increase is having the desired result n her Absolute Neutrophil Count. So far, all I can tell it is accomplishing is upping the “sibling argumentative” quota around here. (sigh) We can’t even blame steroids anymore, she finished those on Sunday. And the other two kids aren’t on them. Although the dog *is* on them …. does that count???
Not for one single solitary moment have I forgotten, or taken for granted, how well Kendrie has done with her treatment. She still has this lingering cough, so we've had to add yet another medication to her litany of night-time drug cornucopia and oh, yeah, there’s the whole cancer thing, but compared to many of our Caringbridge friends, our life is cake. So to put it in perspective, here is what is NOT going on with us lately:
We are NOT having surgery on Valentines Day to remove our sacrum and any residual germ cell tumor like our sweet Atlanta friend Mary Grace. We ARE praying for the surgeons to have brilliance and clarity that day.
We are NOT thousands of miles from home in NYC, undergoing surgery and chemo for neuroblastoma, anxiously awaiting the day we can travel home, like Kylie. We ARE praying for healing and safe travels for Kylie and her family.
We are NOT anxiously awaiting scan results to find out if the spots that showed up on our lungs during our routine scan last week are indeed new neuroblastoma spots… which would be devastating, like Chandler. We ARE praying for good news from today’s scans ….so many people are praying.
We are NOT in the hospital with relapsed ALL, having our bone marrow transplant TONIGHT, like Meguire. We ARE praying for Meguire to do well during transplant, and for this to be the beginning of a new and healthy life for him. Praying also for his family during this stressful time, as they are separated, in a hospital far from home, and will be for months.
We are NOT limping around town in our new bright orange cast, suffering from a leg fracture after our chemo, radiation and two stem-cell transplants, like Camp Jack. We ARE thrilled to know it’s “just” a broken leg!! When you are a cancer parent and fearing the symptoms indicate a relapse, the news that it’s nothing “more” than a fracture is joyous indeed!
We are NOT home with our family, suffering from relapsed Ewings Sarcoma, facing the reality that time is short, precious and limited, like Stephanie. We ARE praying fervently that Stephanie continues to feel well and enjoys her time with the family who loves her so much.
We are NOT hours from home, in a hospital PICU, feeling depressed and sad, only a few days after experiencing an unexpected “brain bleed” that was so severe it took us off the waiting list for the liver transplant we desperately need, like our online friend Haley. Haley and Cheryl, we ARE praying for Haley’s continued recovery and want you to know we will do whatever we can to help.
We are NOT in the hospital with relapsed ALL, just days out from the transplant that will hopefully save our life, like Taylor. Shawnee, we ARE searching for more (cute!) pediatric surgical masks for Taylor and will keep your entire family in our thoughts and prayers.
We are NOT still reverberating from the news that our ALL came back almost a year after we finished treatment, and are now facing the beginnings of our relapse protocol, like Matthew. We ARE hoping your inpatient chemo trip goes well this week, Matthew, and HUGE kudos to so many of your friends for joining you in the head-shaving Buzz-Off! Great pictures, by the way!
We are NOT one of the two families I know who not only have one child who has relapsed in their ALL protocol, but has another sibling also fighting an ALL battle. People without a sick child say to me, “I just don’t know how you do it” and I get annoyed. But I look at Kevin and Brian’s mom Lisa, and I look at Ashley and Ryan’s mom Robin, and think to myself, “I am so amazed and impressed with how gracefully and tenaciously they handle all this ………. and I just don’t know how they do it.”
And lastly, we are not the parents of Marcus or Carter or Hayley, who I can only assume are struggling with finding their peace here on earth while their beautiful children are waiting for them in Heaven. Or Garrett’s parents, who just today had to pick out his final resting place and make funeral arrangements. We ARE praying for each of these families and can only hope their burdens are lifted by knowing how many lives were touched by their children, and how many care so much for them.
So, if you’re one of the wonderful people who come to our site on a regular basis and check in, and take the time (much-appreciated, by the way!) to sign our guestbook, I want to say thank you. If you only have time to sign one guestbook today, please skip ours and sign one of the sites I have spot-lighted above. We love the messages, too, but I think some of these families need the support a little more than we do right now.
WORST PART ABOUT HAVING CANCER TODAY:
Well, geez, did you read that list above and see how many innocent kids are struggling with this cancer monster? I mean, it’s even more unfair than when Kellen grabbed the last Capri Sun out of the fridge and drank it down like a greedy loser-head before I had a chance to get it!
BEST PART ABOUT HAVING CANCER TODAY:
The fan-tab-u-lous care package my friend Haley sent me (and my stinky brother and sister ... yes, Mom made me share!) in the mail a few days ago ….. but when my mom went to the site to thank her (Haley is waiting for her own liver transplant!) she got some bad news. So now even my best part is tainted a little.