It has been a roller coaster FOR sure! We knew that it was going to come down to a last-minute call for surgery, but this was a front seat “fall apart” in the making. Jake was to go to surgery on Wednesday and everything was looking good… so on Tuesday we went in for a chest x-ray, counts and transfusions, only to be unexpectedly admitted over night. His counts were to low and the plan was to transfuse thru the night and then go straight to surgery that morning. This was not part of the original plan as neither one of us had anything to stay the night. Not to mention, momma was about to be gone for 7 – 10 days and I still had lots of packing and planning to do for that last night. Easter needed to be organized since I wasn’t going to be there, ya know? But we stayed, and at 5am, they took blood, came back and said, “it’s a go!” They came to get us a little bit later and off we went. BUT as we were being wheeled down the hall toward the pre-op area, out of the double doors came our surgeon, Dr. V. Straight out of a TV scene… “bad news… Jake’s platelets came up, but his ANC took a dive”. A big dive into neutrapenic numbers. Somehow, in a couple of days he had gone from the 900’s to the low 400’s. UNBELIEVABLE! At that point we were told that we would try again on Friday and in the meantime, they would boost his ANC with GCSF – remember, those were the shots Jake had at home for two weeks during pre-stem cell collection. AND we were informed we had to stay inpatient till Friday since Jake was neutrapenic for fear of picking up an infection. His hospital room = controlled environment. Needless to say, Mommy was a mess! But after a lot of discussion between our Onc team and Surg Team, we were discharged that night! Hallelujah… momma got to go home to pack and prep… Jake got a good bath since he won’t have one for a while. But we had to be back at TCH all day the next morning (Thursday) for transfusions again. Let me tell you, 4am Friday morning came quick! Yesterday morning (Friday) we loaded up, headed back to the hospital, and surgery was a go! After three delays, forth time was the charm! We were prepped for a 12 hour sit in the waiting room, but hours into his surgery, we were called into the little room and told they were “closing him up soon, it went great.” It was a GOOD FRIDAY indeed! We prayed that God would be with them, bless our surgeon, that the time on the table

would be as quick as possible, that the surgery would go smooth and they would be able to get everything they needed… our prayers were answered!!!! They started at 7:30am, they were done by 3pm! And we went from recovery to the PRCU which is a step down from PICU… such praises! This floor still has very specialized care but it’s a little more private, quiet and comfortable. I have a place to lay down, rather than a chair by the bed… whoo hoo! Because of the yo-yo’ing with Jake’s platelets all week, the anesthesiologist wasn’t able to give the epidural that we hoped for, so we are struggling with pain management and his oxygen levels today. He’s also working a big fever so we’ll spend another night on this floor, but he looks really good. His incision is HUGE! The mass is gone! The adrenal gland that started it all and was encased in the tumor is GONE! The kidney (that Doc V was concerned with because of the tumor surrounding the veins going to it) did great. He feels there wasn’t any trauma to it. They took new biopsies of the liver and we’ll get those results back in about a week. We are a step closer… deep breath! We are so proud of him! His strength and ability to keep going is just amazing. Thank you for all of

your prayers this past week and a half while things went from on, to off, to on again. The emotional roller coaster was definitely overload and your encouragement picked us up off the floor and kept us going. May you feel God’s grace as we do! Wishing all of Jake’s prayer warriors the most blessed Easter!

 

Sometimes the fear creeps in.  Most days, I have this down… pressing forward, nerves in tact, smiling sweetly – I’m told.  But somedays I break.  It seems that tonight, today, has been one of those days.  Today, Jake was wonderful.  He was bouncy and playful and full of life.  Until the meds knocked him out, he played and played with one of his little friends. In fact, he pretty much took a doctor DOWN as he and his friend were big wheel racing thru the infusion room (that Doc will pay better attention in the future when he hears wheels burning up the hallway.)  Other than the usual, port access and long day, it was a pretty good day for him.  But for me, it’s been emotional.  I met a very special mom and her little boy.  He’s just a year older than Jake and I can’t get him out of my mind.  He was having such a hard day and he looked so worn out.  He’s been fighting for a while.  In 2010 he was diagnosed, for the first time.  He made it to the other side… NED!  Then, the cancer returned.  Neuroblastoma, just like Jake.  It’s such an angry, tortuous disease. It stalks and lies in wait while it quietly ravages the body of your child.   I talked to her for a while and she was kind, and tired, and sad.  I could tell in her sweet smile, she is so, so sad and her hope is being pushed to it’s limits.  Tonight I just can’t dry my eyes, for my heart pains for her.  As a mom, my heart truly aches for her… and as a mom of a cancer kid, my heart has a depth of hurt that I can’t ever put into words.  I have prayed for her all day.  As she held her son in her lap this afternoon, I watched and held back tears as I sat and held my sleeping son.  So tonight, I ask you all to pray for this family.  I didn’t ask if I could post their names so I won’t, but God knows who they are.  I ask you all to pray for her son’s healing, for good days, and for hope to be strengthened within her.  She knows God, we talked, and I know she knows Him well.  But I just feel the need to ask all of Jake’s prayer warriors to lift her up and ask God to fill her up.  This is so hard.  This cancer life is SO HARD!  Tomorrow we are back at TCH for Jake’s CT scan to prepare for surgery.  I’ll post again, with a more positive message, I promise.   “The Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express.”  Romans 8:26

We spent the day at TCH Thursday and indeed Jake needed transfusions. It was a rough day for him as he just wasn’t ready to be accessed again. It was less than 48 hours that he had been de-accessed so it was just too much for him to handle this soon. They finally came to the conclusion that he needs a little something in the future to mellow him with his chest port access, as they are getting more and more traumatic for him. He’s actually getting really good at the blood draws from his arm as the picture shows but port access is another story. For now, we are home until Tuesday when we go in for transfusions again and we’ll try a little ativan to see if that helps. Cameron came to help and hang out with us and they were able to participate in making their own hand sculptures. The hands will be painted by artists at some point, put on dispaly, and then they will be part of the auction in September that benefits Texas Children’s Hosptial. The boys really enjoyed it and the artist’s involved were so good with all of the kids. Thursday night was the Bake 4 Jake sale and it was such a wonderful night! We are so, so thankful for everyone who participated. I have a few thank you’s… thank you Trinity Lutheran Church and John Wesley Methodist for being such a huge part of this. A big thanks to Kathy, Adriene, Sarah and Tracy for working the sale. And thank you to the sweetest, most giving, ladies in the whole world, Sarah, Debbie and Tracy for spending the last few weeks putting this whole thing together. They worked so hard and it showed. It was a so nice to see so many friends and hear so many encouraging words. And look at the poster behind us… Tracy’s art skills came in handy! Jake has been invited to participate in a photo shoot next Saturday with some of his TCH buddies to help with the petition and push for the NFL/MLB Wear GOLD In September For Childhood Cancer Awareness Month. We are taking the poster and hope to use it for him to sit on during his individual shot. We’ll let ya know how it all works out. On Friday Jake’s energy was up a bit so we made a quick, masked visit to his preschool. This is the second time we’ve been able to do this… his class has been working on habitats and we are so thankful that they continue to include him. This was something that he could definitely do from home and we did! And, of course it was a dinosaur habitat… what else??? We stayed just long enough to drop it off and snap a few photos. Now it’s on display with all the others from his class. He was so happy and as we were leaving, walking down the hall, he said, “Momma, I really miss this place. I wish I could be here everyday.” For him, it was just an off-the-cuff, little boy, truth. For me, a little something different. I pray every day that he will return to school and these quick and special visits give such a lift in knowing that one day soon, preschool will be part of the daily routine again. For now, we take it day by day and live

life as “normal” as we can…. and today is a good day.