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Wednesday, January 27, 2010 - 2:11pm

There has been a lot of activity since the last entry, which we will try to expand on in the weeks to come, but we wanted to get a quick update out at this time.  We know now with 100% certainty that we will be starting treatment again very soon.  Most likely another chemotherapy regimen.  We had a second opinion consultation with one of the country's best radiologists and someone who is very familiar with these tumors, and in reviewing Hailey's scans, he agrees that there has definitely been slow, steady growth occurring (likely starting in Februaury of '09 to date) AND the swollen ventricle is a new issue and one to be concerned about.  So, Shannon and I both agree there is no way we can hold off any longer.  Our hope is by starting treatment immediately the tumor will shrink again and avoid any irreversible damage to her eye sight or any other functions, and avoid or put on hold the need for a shunt as well.  And we of course hope that she makes it through the treatment with minimal to no side effects from the treatment itself, and we can somehow still make progress on the personality and sensory issues that have been a result of everything she has been through. 

We have two more phone consultations with other institutions in the next week to be sure on the type of treatment we start, but as of now all signs are pointing towards the chemo regimen UW recommended.  Port surgery would be in the next couple weeks.  And chemo would start likely the week after.

 

Wednesday, January 13, 2010 - 5:42pm

After reviewing our case in detail, the UW Tumor Board is recommending we start treatment again and they gave us 3 different Chemotherapy alternatives to consider.  We will have 2 or 3 more consultations with different Doctors around the country in the coming weeks, add it all up, and make a final decision.  Our first goal is to make sure there is agreement on what the MRI scans are actually showing us, and if that is the case, gather recommendations on treatment alternatives and whether to treat at this point or not, and then have a plan of attack in the next 4 weeks at the most.  Hopefully sooner.  Depends how fast these other consultations can be arranged.  There are several factors to take into account. 

The neurosurgeon at UW did not say Hailey needs a shunt placed at this point for the swollen ventrical issue, but that is a definite concern and one of the main reasons (along with apparent tumor growth in general) to consider resuming treatment and trying to nip this all in the bud before it gets too far along again. That approach is balanced by the concern of pumping more poison into her body AND maybe most of all, what that does to her mentally in the process (port surgery, consistent pokes again, someone messing with her on a weekly basis, etc.).  We are trying to make progress on the personality and sensory issues her unfortunate reality has caused her over the years.  Tough to do when violating her body on a consistent basis becomes the norm again.

In the end, we are most likely heading for another round of treatment, and working on ways to make it as easy on her as possible in the process. More to come when we finish the process of additional consultations.

"Feel the fear, move through it, do it anyway."  Can't get that quote out of my head right now.

Thursday, January 7, 2010 - 8:20pm

Not the best news today.  We are sorry to report that the results of Hailey's MRI were not at all what we were hoping for.  We haven't had much time to process all this yet as we found out at 5:00 on our way home from Madison and have been with the girls ever since. 

Hailey's tumor has grown slightly since her last MRI so they compared her scan to the scan from 1 year ago and had a few different people look at it to be as sure as possible, and it appears the tumor has grown 10-20% overall in the last year.  And maybe most disturbing, she appears now to also have a swollen ventrical, which is a new issue...this has never shown on any of the scans to date.  The swollen ventrical is troubling because that can cause the cerebral fluid not to flow correctly (which can lead to lots of problems) and the treatment would be the need for her to have a surgical procedure to put in a shunt. 

So all of this combined is concerning to say the least.  A sign that things may not be heading in the right direction again and our overall reality (which has never gone away in the last year or so off of treatment) has reared it's ugly head again.

Her case is going to be reviewed at the UW tumor board this coming Wednesday to get consensus on what they are seeing and a recommendation on appropriate course of action at this point.  Shannon and I have also already decided we will be sending all her information to another institution (we are deciding on which one) for a fresh look from another team, and then based on all of that information, we will make a decision on what's next for Hailey and our family.

More to come as we sort through this.

 

Monday, January 4, 2010 - 10:36am

UPDATE: The day after Christmas we started Hailey on the growth hormone medicine again, but this time we started with just 1/4 of a pill each day.  We did that for 5 days in a row with no vomitting.  Now we are on 1/2 a pill a day and she has handled that well the last 2 days with no issues.  The hope is we can work her body up to handling the whole pill at once without throwing up. And amazingly, she continues to take it with a spoonful of cottage cheese with no complaints or battles.  That's been a minor miracle in and of itself!  

Big day on Thursday.  We have another MRI in Madison.  As always, we're fighting off thoughts of a change in her tumor size and hoping hoping hoping for no growth again since last MRI.  

MRI weeks suck, but it could be worse.  Another update once we have the results.