Pain and other things

We had a follow up appointment and lab draw today to see if Shoshana's white blood cell counts were high enough to hit her with more chemo or not. Finally! We can begin her third round of inpatient heavy duty Methotrexate infusion. Since she has been taking longer and longer to "recover" from those treatments they are going to decrease her dose to 80% based on how sensitive she is to all the other chemos as well. It makes sense that she would be sensitive to more than one. 

Speaking of sensitivity, she is currently on a 30% dose of Vincristine in an attempt to reduce the neuropathic pain side effect but we're not seeing a significant improvement since dropping the dose from 50%. We saw the pain team yesterday and the decision was to increase the Gabapentin beyond the recommended maximum dose since she isn't showing signs of side effects of that drug yet. After this next dose of Vincristine we will have a more in depth conversation on whether to stop the drug altogether (which would greatly increase her chances of relapse) or figure that she is one of those rare people who have severe side effects with any Vincristine whatsoever and give her a higher dose while focusing harder on managing her pain.

The pain side effect has become such an issue that we once again brought Shoshana to the ER last weekend simply because her pain was out of control and there was nothing more we could give her at home. That was while on two narcotics known as Methadone and Dilaudid as well as Gabapentin which is technically an antieleptic but is the mainstay drug for neuropathy. Besides the glottic stenosis, glottic edema, and tracheostomy, the pain itself is considered a severe side effect. Sometimes she wakes in the middle of the night with severe pain, sometimes, like this morning, she is simply grumpy for a while before admitting she has pain. The goal is that she wouldn't need Dilauded more than 4 times a week. At this point we're at 7-8. Unfortunately, since she is already on a pretty intense pain management regimen any increases to her pain medication will need to be really slow unless she is inpatient where they can monitor her very closely.

Please also pray for a former roommate and his family. They just finished a set of full body scans this week ater their last ditch effort to stop the spread of his rare neuroblastoma. Unfortunately, the scans show cancer all over his body. The mom says they are going home for the weekend and having fun before making any more decisions about his care. They are believers with two sons and they live in Yakima. I cried and gave her a hug through she didn't cry with me. She says that she is still numb from the news last night and hasn't cried about it yet. My heart is breaking for them. She is such a sweetheart and we have a lot in common. Our kids were going through a lot of the same struggles when we met and I was encouraged by her several times. Please pray with me for them.

On a lighter note, here are some pictures of what Shoshana has been busy with recently:

Lunch with a different former roommate (second from the right). She met their new puppy afterward.

Playing with Abi and daddy. I love Abi's expression in this picture. They sure have the best daddy in the world!

At the entrance to the Seattle Children's Museum. She had a great time.