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
Posted on March 27, 2018
Posted on March 27, 2018Lots to tell with Mr. Stinky. Last Wednesday, he had a spinal tap with chemo. His counts were borderline transfusion stage, but we went ahead and continued with his chemo and lumbar puncture with a lab follow up this coming Wednesday. His spinal tap procedure went fairly well. He did have a little bit of a hard time waking up out of anesthesia. I look forward to the time when he gets his wisdom teeth pulled just to see how he reacts to the anesthesia because the kid is seriously goofy when he is coming to. It is a grumpy funny but still good for a chuckle.
His doctor and I discussed A LOT at his appointment. It was an emotional appointment as we talked about the possibility of never mentally growing up. Drake was tested at school to see his educational level. According to the results, Drake reads a six year old level and also is mentally around six years old. While I knew that, having it quantified to an actual age, hurt my heart. I think of all of the life experiences we get to partake in and if Drake stays six mentally, it breaks my heart that he won't be able to get to be a part of those. On the other hand, he has such a positive outlook on everything (as a naive innocent child does) that I think, well maybe he will never have to learn all the ugliness the world has out there. AND as the doctor and I talked about, we never know what Drake's brain may do, once he is completely off chemo and stays off of it longer than 9 months (like before). We saw such a change in his physical ability the last time he was off treatment, even within two weeks of his last chemo dose that nothing can be certain. The body is an amazing thing, and hopefully, Drake's brain will heal the injury that has occurred to it from the chemo.
The doctor and I discussed what that means for Drake's life, such as always needing a caretaker, never being fully independent, and how to go about making sure there is proper peer support for Drake. We discussed all the ways on how to make sure Drake has a good quality of life and what that means as far as my future as well as Drake's future. I'm fairly young (ish) in the scheme of life and to think about your own mortality in relation to the care for your children is something difficult to think about. The doctor and I discussed a contingency plan if something would happen to me, who would take care of Drake, and how to prepare that person for the emotional, financial, and overall stress it comes with taking care of someone with a cognitive disability. Needless, to say it made me think a lot about the future, who were the trusted people in Drake's life, and how to prepare financially for Drake's future when I am no longer on this earth. It was... ugh. overwhelming.
So what is next for Drake? This week he has occupational therapy and labs on Wednesday with possible transfusions. His platelets are the main thing the doctor is looking at with labs. They were 60ish last Wednesday and they have to be above 50 for Drake to continue taking his oral chemo. His IGG (antibodies in his blood) was also border line low. Drake's were 450 ish and anything below 400 needs a transfusion. That is normally a six hour transfusion so we are planning to spend all day at the doctors on Wednesday, then that evening he starts physical therapy (Drake missed last week due to his spinal tap).
He also will be having a Dexascan done this Thursday to help determine his bone density. He had one done way back in Omaha, and at the time his bones were thinner than they should have been. They contributed it steroids. I'm not sure why they are checking it this time, but I think it is to see how much steroids have depleted Drake's bones.
On a side note, Drake finally was healthy enough to visit the dentist. It has been a long time coming. AND he needs braces (ugh). This kid keeps me jumping :) He is so not happy about it, but like everything else, it has to wait till he done with chemotherapy to have someone digging around in his mouth.
Sorry this is so long, but I finally logged onto a computer and can type a lot better using all my fingers than just my thumbs on my phone :)
Never Give Up, All Day, Every Day
Posted on March 5, 2018
Posted on March 5, 2018
address it us
C/O Ericka Medinger
PO BX 1725
Tomball, TX 77377- 1725
This was sent to Stinky today, and when I opened the package, I ugly cried. Thank you to Paul (I don't know your last name as the box was in pretty rough shape). I needed it as a reminder, that our faith is what truly brought Drake through everything last year.
I don't tell people what to believe in, how to believe, or when to believe. I'm not going to tell you which religion is "correct". I do believe faith and your relationship to what you believe in can give you hope. Hope for overcoming any obstacle that may be placed in your life. The conclusion of the obstacle may not be what you want, but there is a reason the outcome is what it is. It is up to the individual to learn from it. This isn't an opener for whether God and Jesus are real or not.
So I want to thank you all for the good vibes, well wishes, and prayers that were sent our way this past year. Whether they were for Stinky to be strong, for the doctors to have the medical knowledge to help him, for our family to stay positive, we appreciate ALL of them. We honestly believe they helped Drake and his ability to be here today, being his stinky self.
Drake went to the ER last week, and for once it wasn't a fever or cancer junk. He was running at school (yay!) and felt a pop in the back of his heel. He couldn't put weight on it but no breaks or anything. By the weekend he was doing his normal "Stinky Shuffle". He finishes PT with Sports Medicine this week (boo) and starts back to OT (his therapist is back from maternity leave). So he will be going to "mom physical therapy" while we wait for an opening at regular PT in the rehab department (they gave away his last spot due to a scheduling error after we had been waiting a year for it).
Labs on Wednesday to see if the increase in dosage of Mercapourine and Methotrexate have dropped his counts. A breathing treatment of Pentamidine (sp?) and he is good to go for another two weeks before he has a spinal tap and chemo through his port.
There is more I want to post on about Drake's school stuff, but I am waiting for all the printed results from his testing he took for ARD. The hidden side effects of chemo is an ugly thing and chemo brain is a serious issue. Anyone have any ideas about how to teach a kid the phonics and rules of reading (again and again and again)? I am all ears.
Never Give Up, All Day, Every Day