Posted on July 19, 2017
Posted on July 19, 20179 pounds in two weeks! Guess who is back off TPN. The last week this kid has ate everything in the house and hospital. Counts were low, so still delayed chemo and mercapourine and methotrexate. Isolation is the name of the game. Lots of movies on the couch and video games :)
Because it has been asked a few times recently, Drake's PO Box address is as follows:
C/O Ericka Medinger (his Aunt)
PO Box 1725
Tomball, TX 77377
He only has 1 donation page (listed on his about info), all the others are fake (hopefully we got them all shut down and people were able to get their money back)
Posted on July 18, 2017
Posted on July 18, 2017Sorry we haven't been around much. There has been lots of doctor appointments, hospital stays, and this morning a trip to the ER. UGH....
So lets start with the good(ish) stuff. Drake was home to celebrate the 4th of July and enjoyed the fireworks and was allowed to light them off himself (with adult supervision). First time he has been allowed to and he thought it was pretty awesome. We also have been taking small day road trips to little towns around us. We went to Anderson, Texas for Stage Coach Day, and he was able to ride in a stagecoach around the town, tour an old boarding house/inn and love up on the horses. We also found a small cafe there and Drake voted it "hands down the best hamburgers in Texas".
Now the medical junk. Stink met with the gastrointestinal doc early July. They forgot to read his test results of his EGG in June, so there was no change there. We just scheduled another appointment for August. Stinky's appetite has improved, but not for no salt, dairy free, and gluten free stuff. He wants FLAVOR he says.
Cardiologist appointment went well. Drake does not have Louie-Dietz Syndrom so they are not sure if the chemo or when he went into shock caused some of his problems. He has root and ascending aortic dialation. It has decreased from February but the doctor says he will be on atenalol all his life to keep it from growing. We will need to be serious about watching it so as he grows older he wont have complications like Aortic Dialation or an aneurysm. His right atrium and left ventricle are enlarged also. So with all of that info it means Drake can not compete in sports, no isometric activities, no push ups/pull ups, weight lifting, no contact sports, and no excessive physical activity. Nothing to put strain on his heart or chest area.
This is what broke me this month. You hurt for ypur child going through all this cancer crap and to find out it has taken another part of him away. Dont take me wrong, I am SO GLAD Drake is a warrior and continues to fight, when he has been through so damn much. BUT my heart also grieves for my spastic active little boy that enjoyed soccer, throwing and hitting the baseball around, my little water bug who loved to swim for hours, for the athlete he wont get to be in high school, for the man he will grow into that wont be able to rough house with his kiddos or play tackle with his son. My heart hurt. It puts a new worry on us on how to keep him healthy without non strenuous physical activity. A kid is suppose to be wild and explore and be active. Its how they learn, it provides friendship and sportmanship, they learn respect for coaches, empathy for others, integrity, and so much more. Yes, I know sport are not for all, but this family enjoys them. We love watching kids be active, we love cheering on our teams, we love the "brotherhood" of physical sports and activity. With all of that, I had to step back and remind myself that Drake is so much more than that. He is a warrior, he has fought huge battles in his short life and will continue fighting them. He is stronger than any kid should have to be. He is a funny little duck that loves to laugh at Youtube videos, help me make new recipes, loves to paint rainbows and colors over every free notebook page there is, he is my gardener who loves to grow his own food, he is my foodie buddy when it comes to exploring new areas and restaurants, he has a sense of adventure and loves to travel, he is my Drake.
Oncology has been delayed. His counts have dropped as expected after the high dose of methotrexate. The methotrexate basically burned Drake's soft tissue lining of his gastro tract, causing lots of pain for Drake when having bowel movements. He felt as he was burning from the inside out again. Carafate seemed to help, but the kiddo was in major pain for a week. On Friday of this last week, he went in for lab and blood transfusion. During his blood transfusion, he spiked a fever and we ended up in the hospital till yesterday (Monday). His cultures came back negative on the 24, 48, and 72 hour readings. They think he just had a reaction to the platelets and blood. He had to have another transfusion on Sunday and they premedicated him with Tylenol and no problems. His ANC is low at 160 (anything below 500 is considered at high risk of infection) so we are in isolation pretty much. We see the doctor tomorrow but I doubt we start back on chemo since his numbers are still low.
We were suppose to start OT today. We were sitting in the truck waiting for the appointment this morning and Drake felt a snap in gis port and had a lot of pain go through gis chest. I disconnected his TPN and went to flush the port with saline, and Drake started screaming. We bypassed OT (thank goodness the speciality clinic and hospital are connected) and went to the ER. They took xrays of his chest and it showed the needle had came out of his port and lodged under it in the soft tissue. Some of the TPN had pumped into his chest. It will eventually absorb into him, but still painful. So they unaccessed him and reaccessed. During all of this Drake had a major anxiety attack. The ER doctor ended up giving him adavan (?) And some other med up the nose to help Drake calm down. By the end of the visit Drake was a space cadet but was calm.
So yep that is what has been happening the last few weeks. Needless to say we need a calming vacation and some stress free days.... :)
NEVER give up, all day, every day.
Posted on July 18, 2017
Posted on July 18, 2017Hi quick update Drake was released this weekend he is home. However his counts are down so he cannot be around anyone. He is happy though being home with cousin, aunt, and mom. The house is sterilized mom has plenty of mask. And best of all i am sure. He gets to play games with cousin
Hope everyone is enjoying your week.