Hello friends. This message comes to you tonight with heavy hearts. It all started about 2 weeks ago after the boy's 9th birthday party. Jake started coughing and noticed that he felt a little winded upon running or playing hard. That week at school he was struggling with his breathing when he played in gym class. We took him to urgent care at PIP in Maple Grove and they diagnosed him with an ear infection. They said his lungs sounded great. Fast forward to this morning. He woke up very swollen and having difficulty breathing. Sam took him in to North Clinic where they took a chest xray . They saw a "white suspicious mass" on his lung area. It was large enough that it was pushing on his heart and trachea. They immediately recommended that we go to Children's MPLS. Upon arrival they ordered a CT scan. This is what we know this far...…. He has a solid mass that Is invaded his lung space. It most likely is very fast growing. He had to have a procedure tonight to drain fluid around the mass so they can get in and biopsy it tomorrow and hopefully help him breathe better. He did this without being sedated and with the assistance of his amazing dad by his side. My warrior men, they amaze me so much. He is such a strong and incredible kid. Anyone that knows Jake well, knows that even flu shots have been a struggle for him in the past. God is already provided so much strength for all of us. Tomorrow they will biopsy the mass and we should know in 24 hours or so of the diagnosis. We have been informed that they think Jake has lymphoma. As many of you know, Jake was one of the LLS boys of the year in honor of his mom a few years ago, and has emptied his piggy bank more than once to help fund a cure. Although we aren't sure that this is his diagnosis, we are praying that whatever it is, it is treatable. We serve an amazing healer in the Lord Jesus Christ and have and will pray for complete healing for Jacob. He is our whole world and we hope you will join us on this prayer journey in hope of complete healing. Please also pray for Sam, as this journey is far too familiar in his heart, And for Ben. He is hurting too. Check back for updates. We love you all.
The appointment started out with PT. His new assignment will be to put on his leg braces first thing every morning and take a “cruise” around the block. If you see him out, give him a honk or wave. We all know how much he loves those clunky blue braces. 🤣🤣 He needs to get his strength up and his ankle stability and mobility back. This will hopefully help with that.
His labs came back a bit off today. Hemoglobin was 7.5 (that would usually require a transplant) but overall he’s not feeling the low hemoglobin “feels” so we will hold off on that for now. Absolute neutrophil count and platelets also dropped. We realized that our pharmacy was refilling the old prescription dose and causing his chemo numbers to go out of whack again. Thankfully we caught it before he was feeling the effects. He has been doing so great, so we really didnt notice.
They tested his fungus levels and his IgG levels (basically how strong his immune system is). The fungus is still present and too high in his blood stream to take him off the antifungal meds. Geez that fungus is stubborn!!! It’s been almost a year of treating him for that. His IgG levels were low too, meaning he will need to get a continued IVIG infusion every month until he’s done with treatment next April. This will help his immune system fight off anything that is coming to attack it. (Virus, bacteria, fungus). Our insurance didn’t want to cover it because it’s pretty expensive, but after our Dr. sent a letter of petition, they agreed to cover it once a month. PTL!
Jake was able to tag along with Ben and Sam to baseball practice tonight. He was feeling up to going. I’m so glad! We truly have some of the best support and so many people just rooting for Jake to get strong again. He will start playing with his own team next week.
To all those who continue to be in our village....thank you. It means more then you know.
We will start steroids tomorrow. We will also check counts in a few weeks with home health to see how his hemoglobin is, as well as how the other blood counts are responding. We can adjust things accordingly at that time.