Category: Mom’s Blog

So we came to the fork in the road once again, and detoured a bit.  Surgery is off next week.  We are postponing for after Jake’s next round of chemo.  Instead, we will be admitted on Thursday for his next round of chemotherapy.  We met with the pulmonary Doc yesterday for testing and another chest X-ray and his words were “last week’s postponement was a very good call”.  Jake’s lungs are functioning at 60%, he pointed out how you can see the illness in Jake’s lungs, and his oxygen level is at 94% (for my medi fam/friends – y’all crack me up BTW).   Jake was really cute trying to blow into the machines.  They said that he was borderline on whether to have him tested this way as most of the kids his age aren’t coordinated enough to combine the blowing and holding their breath long enough for the computer to get the information it needs.  We practiced and practiced and weren’t quite sure we were going to get what was needed but in the end Handsome came through in a very big way.  Plus it helps to have a video game, driven kid. Afterall, he has lots of brothers and sisters to compete with so he’s very, very good with technology. The computers are set up with games so that as he blew harder and harder he could make bowling balls roll toward the pins and balloons burst into fireworks.  It’s brilliant!  I can honestly say that I found myself thanking God for all the video gaming that I usually complain about.  This was ONE PROUD momma as they kept telling me in such surprised tones how awesome he was for being able to do this!  (Big, BIG grins!)  As for his lungs, Dr. Malory feels it may actually be a new virus, not the previous RSV, but that the lungs were not completely healed so that’s why it’s settling in a new way.  And Jake is on another new drug so that it doesn’t turn into a bacterial infection.  We seriously own half of Walgreen’s pharmacy on our kitchen counter. Whew!  What a couple of weeks… twists and turns for sure!  BUT OVER!  Decision made… we move forward.  That is the best feeling of all!  So we head in Thursday for chemo… this one is 4 days of infusion and one day of flushing.  This is the one with the cisplatin (ci- SPLAT-in) as one of the drugs.  If you remember in a previous post, the one that had me spending a lot of time at the washing machines, washing EVERYTHING from all the nausea. But this is also the only round of chemo that we didn’t end up back in the hospital for weeks with a neutropenic fever episode.  We have high hopes that he will respond the same this time.  This week, we’ve heard from several new followers, friends, and we are so thankful that you all are sharing Jake so that others will come to know him, lift him in prayer, and spread childhood cancer awareness.  I’ve also heard from lots of old friends and I can tell you that your notes, texts, e-mail and cyber hugs keep our spirits lifted high!  I’d like to ask you all to lift up a special friend who began his bone marrow journey this week…  his name is Timothy.  He’s 14 years old and fighting Very High Risk A.L.L. Hypodiploidy Leukemia.  You can send Timothy and his family some prayers and hugs on their Facebook page at Timothy’s Leukemia Journey.  We are feeling blessed and loved by all of you, Jake’s Warriors, as you continue to look out for our family…. “Let each of you look out not only for his own interests, but also for the interests of others.”  Philippians 2:4   You all do this for us and so much more!

Tomorrow we go in to TCH and see EVERYONE, hoping to get clearance for surgery on

Friday. As of Monday, Jake’s lungs were still wet – upper and lower lobes, front and back… wet and crackling. We came home with two more new meds. I can’t say I can even try to guess how tomorrow will go as he’s still coughing and from a mom’s view, I don’t know that it sounds much different… it’s a little, but not much… we shall see. We’ll see our surgeon, anesthesiologist, radiology, our Oncology Doc, and he’ll have more labs. It may be a long day for Jake. I’m trying not to think on it too much since we just don’t know. Tomorrow will be the day. The call will be made. Either we go in Friday for surgery or we likely head toward another round of chemo. It’s important to keep these kids on their chemo schedules so he doesn’t back-slide. Our hope is that we make it. Jake is as beefy, hydrated, ready to go, and looking better than he has in months. It’s been good to have this time for his body to build back. (And from last Thursday to Monday his platelets went from 57 – 70. That means we’re trecking toward an epidural!) We feel he’ll have a much better recovery right now than if we go after chemo, but the lungs are the deciding factor. We can go forward with chemo with a little fluid on the lungs, but surgery is a definite no-go. So we ask your prayers. My human side says, please pray for the lungs to be clear. As scary as surgery is, it must be done, so let’s get it done while he looks so good – but only if the lungs can take it. The other side of me says, God’s will be done. He’s gotten us this far, so whatever the decision, that’s it. No doubts, no regrets.. Oh, oh, I love this song playing in the background. Think I just got another God wink… he’ll “carry me, carry me, carry me, now.” I will post tomorrow asking for prayer for whichever way the wind blows. XOXO! You all know I love my music… go listen… http://www.youtube.com/watch?v=CCzW0VlFbgU