Cole's Current Treatment

Here's a note from Dalynn regarding what we're doing in Cole's treatment right now.

Hi everyone! I hope you are all doing well! I know times are tough for so many of you right now, so I appreciate you still taking the time to read this.

Since my last email we have seen GI, surgeon, sleep specialist and our oncology doctors. Our oncologist did agree to a one time try of a steroid taper. Thank you for your prayers regarding this. We did a three day taper and Cole did not have any episodes of waking up gray, zoned and nauseated and vomiting. We monitored his blood sugars and they stayed between 60 to 80. Thank goodness. Now here comes the hard decision, to continue doing the steroid taper or not. According to the oncologist it is not an easy decision. They explained it to us this way. . .to give Cole extra steroids one time during his 3 1/2 year treatment is not a big deal, however to add more steroids every 4 weeks for the next 2 years is a much bigger decision. This is because long term usage of steroids can have side effects.

Which leads me to our next appointment, which was with the GI doctor, Dr. Kobak. Cole has been having tons of abdominal pain and many poop issues. Dr. Kobak thought one of Cole's main issues is reflux and therefore switched his Zantac to Prevacid. He basically said two of Cole's medicines were probably the main cause of this. Steroids are known to cause gastritis, as well as, methotrexate. Dr. Kobak was involved in a case of a little boy who got a methotrexate tablet lodged in his throat and it caused an ulcer. Cole takes 5 tablets of methotrexate every Tuesday night. So needless to say, we need to stay on top of keeping his stomach and intestinal lining coated. Since starting the Prevacid Cole has not been complaining as much of belly pain. Also he told us to stop Lactulose, a laxative, because it is causes gas pain, bloating and cramping. We are to give Cole a more consistant dose of Miralax and our goal is to have "Dairy Queen Soft Serve Poop" once a day. We also had an abdominal ultrasound, which showed Cole was full of poop, so we had to do a "Bowel Cleansing". We were successful and Cole definitely seems to feel better. The ultrasound also revealed Cole has osteopenia, which is bone density loss. This is due to the long term usage of steroids. (Which is why we and the doctors need wisdom regarding the steroid taper because this is just one of the side effects that can come from steroids) We started him on Viactiv twice a day to help with this.

We also met with Dr. Mahaffey, the surgeon, to discuss the possibility of reattempting to insert a permant line, a Port-a-cath, in Cole. The first line was unsucessful due to a blood clot in Cole's heart. After discussing our options with the doctor, we decieded to go for the Port-a-Cath again. It has been almost one year since we tried last time and the blood clot should be reabsorbing and not getting worse. We are scheduled for the procedure this Friday, Feb. 6th. There is no good way to look at the blood clot prior to surgery and we are doing this to prevent Cole from getting stuck 3-4 times every time we go to clinic. Our prayer is the blood clot will be gone and there will be no issue with inserting the port-a-cath!!! PLEASE PRAY!!!

Last, we saw a sleep specialist, Dr. Dubik, yesterday since Cole is not sleeping well. He spent over an hour with us just discussing Cole's case. The doctor is going to try and let all of us rest first for a couple of weeks and then try to tackle the behavior issues. We have started Cole on Ambien, not for long term, but just to get him some rest for a few weeks. We tried it for the first time last night and everyone slept till 5:30 AM. It was Amazing! We are emailing the doctor everyday with updates on how it is going and making adjustments on the time and dosage of the medicine. Please pray for us about this. Because in 4 weeks we will have a new baby, a 17 month old and a child with cancer trying to tackle sleep behavoior issues. Needless to say we need your prayers!!!!!!!!!!

Okay, so to recap on Prayer Request:
1. To do a steroid taper or not
2. Daily Dairy Queen Soft Serve Poop (did you ever think someone would ask you to pray that):)
3. Healing of osteopenia-bone density loss
4. Prevacid controls the reflux
5. Sleep and tackling sleep issues
6. This Friday, port-a-cath sx goes Awesome and there is no more blood clot!!

Thanks for all your continued prayer and support. We don't know how we would endure without you!!

dalynn