Central Line

If everything goes to plan, this will be our last weekly dressing change and last weekly cap change for Liam's central line. If they do the heparin lock at clinic, then it will even be our last heparin lock.

We are trying to prep Liam for getting his central line out. At his age, a change like this can be difficult, his "noodles" have been a part of him since May 2012.

Liam watches his iPad every time we do his dressing change.

It is day surgery to get Liam's line out. We are scheduled for Wednesday, we don't know what time yet. We hope early, since Liam can't eat or drink before, due to the anesthesia.

Feeling better this morning

After I posted last night, Liam felt worse again. He was complaining that his head was hurting everywhere. He was even crying out "ow, my head". With all Liam has gone through, he's never cried out in pain like that before. Then he vomited again. After the doctor said "watch for meningitis" earlier today, we were just a tad on edge! There is a small risk of meningitis with the lumbar puncture.

I called the oncologist again last night. He reassured me that these symptoms sound very much like a lumbar puncture headache. You know it's a different world when the doctor asks if you have codeine or morphine for your child at home. (no, we don't have any) He also suggested we could give Liam caffeinated pop. Apparently, caffeine can relieve a lumbar puncture headache. Liam has never tried pop, but we weren't exactly keen on trying caffeine at night unless we were desperate.

Liam has already had 6 or 7 lumbar punctures. I'm glad he hasn't experienced this before. Thankfully, the protocol is 6 months until the next one. The doctor mentioned they can do some things different next time as well.

This morning, Liam "slept in" until 7:00. He promptly got up and started playing. That was very nice to see. After a couple of hours, he's a bit tired but he seems to be feeling good. Thankfully, he hasn't complained of head pain today so far. I just hope the vomiting hasn't set Liam back with the progress he's made with eating.

Longer Morning at the Hospital than Expected...

After the last couple of days, wouldn't it be nice to have a quiet day.... no such luck!

Liam had an audiology appointment this morning. Liam's right ear has high pitch hearing loss. The good news is both ears are hearing well in the normal hearing range. Today's test gave the same results as 4 months ago. The chemo drug, cisplatin, is known to impact hearing. Liam has had many hearing exams throughout treatment since the cisplatin can affect his hearing now or later on. He'll continue to be monitored.

Liam was complaining about a headache this morning, which is very odd for him. Liam rarely complains about not feeling well at all. I had to carry him out of his hearing test because he didn't feel well.

On a side note, we went to pick up Madison from the "day care", and Emily (who used to work as child life specialist in oncology) ended up walking Madison around the hospital in a stroller the whole time. Madison was upset in the play area! Talk about personal service!

Liam wanted to lay down on the benches in the hallway. I decided this was enough for me to take him to see a doctor. I took Liam to the oncology clinic, we were lucky to be able to see a doctor very quickly. He did a neuro and physical exam and feels that Liam has a headache from the lumbar puncture. They take everything like this very seriously. Dr Ali quickly reviewed the MRI and lumbar puncture and also let me know that the initial lumbar puncture results look good as well. It was nice to hear again about the good results.

After clinic it was past noon, so Madison was hungry and screaming. We went to the car, and Liam proceeded to vomit all over himself in his car seat. Not the first time, but never fun. Then both kids screamed all the way home. We all ended up with headaches!

Liam still isn't feeling great, he hasn't eaten anything all day. Hydration is the biggest recommendation, but he won't drink anything. Assuming the effects are from the lumbar puncture, Liam should feel better tomorrow.

MRI Results Good News

It's been a long day of waiting to hear about the MRI. I paged the doctor at around 4:00 to find out the results.

Our primary oncologist, Dr Lucie is on vacation so we contacted Dr Strother. Dr Strother reviewed the MRI report and images. There is nothing new showing in the MRI, they checked Liam's brain and spine. The spot that Liam had surgery on in August is still there, but appears to be showing a bit less. Dr Strother is the one that told us about that spot in the first place, so he is very aware of it.

Liam still has increased fluid in his brain that needs monitoring. The neurosurgeon will also be reviewing the images to compare with the last ones. We won't get the results of the lumbar puncture for a week or so.

This is good news. I just wish I could feel the sense of relief that I should. 3 more months until the next scans.

We will have a more detailed discussion with Dr Lucie on Monday.

MRI & Lumbar Puncture Done

Liam is still recovering from anesthetic. He says he feels "trippy". It hurts him where they did the lumbar puncture when he walks. It almost always does for a few hours.

Keeping Busy Part 1 - Bake Cookies

And eat them in the morning. Why not.

Post Treatment Tests Tomorrow

Every 3 months we have a day that could potentially be the worst day of our lives. Again. Every 3 months Liam gets the MRI/lumbar puncture to find out if the evil cancer has decided to return. Every 3 months for 2 years, as this is statistically when the most relapses occur.

If there is a blessing, it is that the kids are oblivious. They are playing and having fun and have no idea what the MRI means. Their biggest worry is when they can't find the toy they want.

Liam is doing so great! He's happy, he's playing, he looks wonderful. If only this could be an indicator that the cancer is not back. Unfortunately, this doesn't tell us anything. If there was recurrence, he would not be showing any signs of it this soon.

I just hope the doctor can review the scans quickly so we can get results tomorrow. Unfortunately, our oncologist is on vacation. The head of oncology will be reviewing the scans, so I just hope he isn't too swamped tomorrow.