Posted on May 25, 2018
Posted on May 25, 2018The past two weeks had a lot of ups and downs for Drake. He missed all of last week at school because of normal (OT PT) appointments and their interference with STAAR testing at school. Due to arriving at school on the days of the appointments after the testing would start, he would have had to sit in the office all day. He missed Monday and Tuesday because there was no point in sending him to school just to sit in the office. Wednesday he had the spinal tap and then started steroids. Not usually a big deal, and would have went to school Thursday and Friday normally. Thurs and Friday were test make up days though. With the steroids and spinal tap, Drake just didn't have the stamina to take all day tests the two days if he had shown up at school. So.... a whole week of school missed because of stupid state wide testing that does not benefit the child in any way (and causes massive anxiety to students), but more for the state of Texas to measure if teachers are teaching what it requires to pass the test, so they teach to take a test - memorization (not comprehension). Some kids can fail a test but have a complete understanding of the material, they are just horrible test takers. Side rant there... sorry.
Monday he had an ultrasound done on his kidneys. We won't probably know the results until August, when his Renal doctor returns from maternity leave. Drake also had an appointment with Endocrine. It is still a waiting process to see if he will go naturally into puberty. The radiation he endured in May of 2017, has eliminated a lot of his hormone producing cells that cause puberty. He has not grown in height in over a year. The endocrinologist says we will will wait till Drake is 14 to see if there is any signs of puberty before they will determine to start giving him hormone shots. By the age of 14, Drake should have grown in height and foot size the doctor says. He has a follow up in six months just to monitor if there is a change in Drake's hormone levels. She does not want to miss the process if it does start because while puberty might start, Drake may need hormone additives help through it.
Then Tuesday happened, Drake spiked a fever of 101.8 and we ended up in the ER. His counts were fine, so just a viral and not an infection. He ran a low fever on Wednesday but by Thursday he was good. He has a nasty rattling cough but chest x-rays showed his lungs are clear. So he is finally back at school but missing so much towards the end of there year is ugh.
We had a revised ARD at school for Drake, that I will go into maybe sometime over the summer. It was a behavior disturbances plan and lets just say I hate the way they label kids who have anxiety and frustrated with school. I plan to incorporate Drake's feelings (maybe even video it because I dont think kids like him have a strong enough voice out there to tell how they cope) into the post because I believe his feelings about being behind socially, educationally, and physically of his peers is what leads to "behavior disturbances" ( in attentiveness, ignoring direction and everything else). Im not blaming the teachers because I KNOW Drake can be a shithead if he feels like it (and yes that is exactly the right word for him those days), but I do think the school is quick to label and not look beyond the surface problem as to find the cause. They want to eliminate the problem, but not fix the cause.
Sorry for the extra side rants in the post, but fighting cancer is so much more than the medical side. It is incorporated into every aspect of Drake's life, his social, educational, physical, and emotional parts. While cancer does not define who he is, it does define how he walks through life right now.
Never Give Up, All Day, Every Day.
Posted on May 17, 2018
Posted on May 17, 2018Spinal tap went well today, except for Drake thinking I was starving him beforehand (because no food or drink after midnight). He has one more left (August) and then he is done with them hopefully. His poor lower back looks like a pin cushion from the needle scars. Counts looked good. His IVIG thing is low (428, they want it above 500), so in two weeks when Stink goes for labs again, he will get an all day infusion. This should help boost his antibodies in his blood, to keep viruses away.
He has an appointment with Endocrine on Monday. He also has an ultrasound for the kidneys scheduled. Hopefully, his kidneys have not enlarged any from six months ago. His Renal doctor has been postponed because she is on maternity leave.
It is getting to be summer and as every summer I will be unplugging from social media. We will be out and about, and enjoying the time exploring Texas or where ever the road may take us. We have one road trip planned already to go back to Nebraska and who knows where we will end up. We tend to have wanderlust during the summer and do spontaneous road trips, camping and fishing, and exploring the side roads. So if you have a quirky oddball roadside tourist trap which is off the beaten path that you think Stink might enjoy (probably in the states surrounding Texas), let me know! Drakers has no "major" appointments this summer (and lets cross our fingers it stays that way). I will probably post pictures here and there, but there probably won't be any major updates after next weeks appointments are in. He will still have OT and PT every week, labs every two weeks, and chemo every 4 weeks, but nothing major. Just a kid enjoying summer break and resting his noggin.
Thank you for all your continued support of Stinkmiester.
Never Give Up, All Day, Every Day.
Posted on April 10, 2018
Posted on April 10, 2018Monday seems to be update day, as we sit in Panera waiting for my nephew's tutor, so maybe I will get better about sharing what is going on, since I will be on a computer more often. Drake's results from the Dexascan came back as expected. When looking at the results, they look at something called a z-score. They compare it to other boys Drake's age, size and such and a normal range is 0 to 3. Drake's is -2.1 to -3. This means his bones are weaker and thinner than the average z-score. The doctor is planning to monitor his Vitamin D3 levels, but most likely Drake will be put back on a supplement for it. He had been on one for a long time, and we thought his bones were getting stronger or at least not weaker. The doctor let us discontinue the med, so it was a few less pills for Drake to take. She is also planning to consult with his Oncologist from Omaha, which was the last time he had a Dexascan done, to see what she thinks about his bones.
Last week, Drake was massive headaches. I figured it was just allergies and sinus issues from the weather. Turns out his labs were very low. His hemoglobin was 5.7 and his platelets were around 60ish (if I remember correctly). His ANC was also low at 180. Thursday he ended up getting two units of blood that helped perk him up a bit.
So... Stink was suppose to wear a mask all day to school, because the flu and upper respiratory junk seems to be making the rounds again in Texas. I wrote out this whole long note to Drake's teacher explaining what was going on, and Mr. Stink being fed up with it all hid it from his teacher. This is how I know he is over all this cancer crap. He refuses to wear a mask out in public because he doesn't want to be looked at weird or to have to explain why he is wearing it. He fights me to go to the doctors and would rather go to school (even though he doesn't care for school all that much). If I forget to remind him of his medication, he just will skip it. As he says, "It is really getting old mom".
Today, Drake had labs again. His counts were slightly better. His hemoglobin was 9.1 and platelets were 80ish and his ANC was 580. So much better, but red blood cells only have so long of a "shelf life", and so he will get labs probably drawn Thursday again. Due to this being his umpteeth time of having to hold his oral chemo, Stink is not able to start back on them until his counts recover higher. He is scheduled for Vincristine next week, and the doctor would like to start back on the oral chemo a few days before hand, but it all depends on counts.
Saying that all, the doctor is talking about extending Drake's end date of chemotherapy. It is tentatively schedule at the end of September but she is uncertain if that will be plausible for Drake. He has had so many delays that his stream of chemo has been very sporadic, especially last year. If she pushes it back it will be most likely another six months tacked on to his end date. Which honestly, just sucks. Drake is so over it, but if need be, then need be.His body seems to be tired of it all too but Drake being cancer free is all that matters.
I finally had his ARD meeting with his school to see what assistance Drake can get in school, what his goals will be, and how to help him succeed more. From my understanding, they will be having him use a speak to text app to help him dictate writing assignments (long ones). I am still a big believer in pencil, paper, and books, and I believe once he can master those then he will have more success.
*** Also, today in Drake's post office box today, we received a letter from the Inspector or something for the Post Office. There was a huge scandal at the local post office with employees stealing mail, where Drake's post office box is located. It looks like during the time of Feb 2017 to December 2017, Drake had lots of mail stolen including cards, packages, and everything else. If, by chance you mailed a check to Drake and it was never ran through you bank, it was probably stolen. I would look through your account very closely and make sure there was nothing removed without your consent. I honestly think the thieves targeted card looking envelopes to get the gift cards, because to cash a check would be very difficult without identification. If you google Tomball Texas Mail Scandal 2017, news articles pop up about it and IF you had any fraud on your account, please contact the police, bank, or any other contact info gave in the articles.****
Never Give Up, All Day, Every Day