MRI and Doctor update 3-5-08

Well I haven’t updated in a while and pics and videos will be coming soon. They’ll be posted below this post to keep things in date order! J

We had Haven’s MRI on Monday. We left the house at 9am and were there until 4pm. Scanning started at 11am and as Haven would have it her recovery from anesthesia was minimal. She woke up immediately and wanted to go home. She was able to help take all the stickies off and she cleaned and closed up her port. Band aids and stickers and we were out of there! Nothing like another 6 hour day in the hospital basement! At least nothing happened this time.

Tuesday we left early and headed out to Oncology for a review of the MRI from Monday. What we got was news that was totally unexpected and didn’t even think we’d hear.

Brain, Pelvis, and Chest MRI’s showed clear and perfect. Nothing going on and everything looks good.
Abdomen – there is something that has grown back in the spot where the tumor was.

Our Oncology doctors of course called Haven’s surgeon in and he insists over and over that there is no way and he got all of the tumor out. It seems as though something has started to grow there again but of course they aren’t too sure of it yet. Our doctors do not like to rush in to anything without all of the details – which is good. However, there is something there and they aren’t sure exactly what it is. We are now scheduled in 2 months to have a follow up MRI of the abdomen to see if it is growing or changing. At that point we will need to discuss surgery again or chemo. We would chose surgery first, however, we need to make sure it’s not too much stress on Haven’s body and it’s actually going to work. We were not expecting this at all.

Our next round of bad news came right after the MRI results. Haven has 3 other syndromes as we’ve discussed before: Hypothalamic Dysfunction, Paraneoplastic Syndrome, and a type of Opsoclonus Myoclonus. There have been small changes in Haven – such as – not yelling and being more polite (although has to be reminded to be nice). She is trying to potty on the toilet but not getting there in time. She still asks for food all the time but not as bad. These changes are not enough and are not quick enough. She did gain 2 lbs since her Feb. 15th visit – which is NOT good. She did sleep very well for the first 3 weeks after surgery but has started talking and sitting up in her sleep again. Note – we have not slept well for 3 nights now! Due to her not having as quick of a change we were given a bulk of mind boggling information.

In 2 weeks I will receive a phone call from her doctor to review any changes that may have occurred – good or bad. If there are no changes we will meet again in 2 weeks to discuss her treatment. Kris and I were given a one year treatment schedule for Haven. Please note this treatment does not do anything to her Neuroblastoma cancer – it’s only for the other syndromes. Treatment for the cancer will be in addition to.

One year schedule of medication and SOME side effects (I will not share all of them – only most common):

Cyclophosphamide: this is the chemo she will receive. This will be taken monthly. Side effects: Vomiting, decrease in red and white blood cells and platelets, hair loss, decrease ability to fight infections, bleeding/inflammation of the bladder (must drink constantly to not build up)

Intravenous Gammaglobulin (IVIG): Immuno-suppressant drug. This will be taken monthly. Side effects: Increase in blood pressure, fatigue, fever, chills, joint pain, vomiting, pain in infusion area, abdominal pain, allergic reaction causing shortness of breath, meningitis symptoms (inflammation of brain, pain in neck, severe headaches). This drug is a product made from human blood.

Prednisone: Steroid taken 3 days a week for 1 year. Side effects: Overeating, high weight gain, high blood pressure, high risk of diabetes while on medication – will need insulin, severe personality changes, abnormal hormone production, muscle weakness, slowed growth, poor wound healing, stretch marks, possible bone breakdown.

Rituximab: Immuno-suppressant. Taken monthly. Will need to be admitted to hospital for over night every month while taking this. Side effects: Nausea, fever, shaking chills, decrease in white blood cells causing high risk of infection by bacteria, virus, and fungus, vomiting, headaches, short of breath, possible allergic reaction causing fluid build up under the skin-lining of intestines-swelling of tongue or throat, abdominal pain, increase in blood pressure, irregular heart beat during infusion, diarrhea, dizziness, low red blood cells (causing you to be tired and weak), low platelets (causing you to bruise and bleed easily)

Again these medications are only for the syndromes NOT cancer. That will be a different treatment. Medications all have to be administered on different days as each takes about 4 hours to do plus set up and take down time.

One of the many great things about Haven is how well she is handling everything so far. You should’ve seen her taking care of her own port yesterday. She freaks when she sees the Huber needle (butterfly thing) – it’s scary big and curved at the end. But once it was put in she did the flushing, put all 3 viles on to take her blood (freaked us out – I couldn’t watch her do it), then reflushed her port and put the Heparin in to close it up. Amazing. Then she got her band aid and was happy. Telling everyone she did her own port.

Anyway, this is our latest update. We’re tired and exhausted from thinking about it. Thanks for taking the time to read about her. We appreciate everyone’s thoughts for her.

Talk soon
Love ya