Late March MRI Results

Howdy all.  Foremost, a moment seldom passes when we don’t thank God for how His love for our family frequently shines through the love and many ways of support that blesses us through you!  We will forever be grateful and will never come close to expressing our gratitude to our satisfaction.

Tonight was a relieving fun night – a family dinner with a surprise bump into one of Bella’s schoolmates.  Bella and Liam were in bright shiny moods tonight.  It’s a treasure to see Bella and Liam laughing together.  Honestly, no words can describe how beautiful Bella’s smile is and how bright her eyes get when we make her laugh…a true treasure.

We know many are waiting for last week’s MRI results.  We received a CD-ROM of the MRI the same day and results on Monday.  Daddy’s curiosity got the better of him and spent a good portion of Friday to examine the MRI and the weekend to ruminate.

The many of you who are close to us know that the last couple of weeks have been very challenging for each of us.  From sweet Liam acting out in school to Bella’s unexpected daily trips to Clinic and Outpatient Infusion Center, cycle four of this “maintenance” phase has really taken a toll on each of us and revealed unpleasing results.  Honestly, without your love and prayers, I don’t know how we could have made it this far nor how we will be able to make it through the remaining nine months.

While Bella’s appetite has remained up since our stay at CHOC, from day 3 on she battled with nausea and vomiting.  The day following our return home after the extended stay at CHOC, a home nurse came out to train Val on administering the TPN.  Not only were we exhausted from the challenges faced during our stay at CHOC, it seems that every day we encountered a new problem with setting up the TPN.  The good news is that Bella’s weight is very slowly climbing and tonight was incident free in setting it up.  And, Bella just loves her little back-pack that carries the IV pump…you should see how cute she is carrying it around in one hand and her Bunny and Duffy in the other – adorable in a medically cryptic way.

Prayer Warriors, if you could please bless us with praying on the following…we’re looking for God’s big help on this one.

The MRI from last Thursday revealed a couple of unpleasant developments: 1) the original tumor, previously having shrunk dramatically, has begun to grow; 2) there is possibly an additional mass that we and the Dr’s hope is only scar tissue.  Bella’s neurosurgeon will perform another surgery to extract tissue for a biopsy of this new tissue.  Then we wait for Mayo clinic to provide results – last time that took about two weeks…another waiting game holding our breath and praying.  From the MRI report, it is difficult to determine if the Dr’s are concerned about scar tissue or gliosis surrounding the hole from her ventricular shunt surgery or if it is from a mass near her ear, referred to on the report as a “persistent left mastoid effusion.”  We will likely find out Thursday when the surgery will take place.  Our oncologist stated that if the tumor is an additional malignancy, there’s nothing additional that she can do to treat the tumor(s).  Obviously, this is unacceptable for Daddy and I have already research second opinion options.  Of course, with California Health Care insurance rules, our medical group allows acquiring second opinion but does not cover any treatment from the 2^nd opinion provider.  Ain’t that a kick in the teeth.

As for the original tumor’s growth, it feels as if we have taken a step backwards.  While we know the potential for a repeat malignancy is high, we were optimistic about our current treatment plan, especially since the success of phase one shrunk the tumor from the size of a golf ball to 6 x 6 x 4 millimeters in December’s MRI.  Even though the growth, now to 9 x 6 x 7 mm, is only 3 mm on two axes, the fact that it is growing seems to indicate that the current “maintenance” treatment is proving not as successful as phase one treatment.  The MRI report reads, "Interval increase in size…raises the possibility of recurrent disease.”

Naturally, this has been very disheartening news for us.  Val and I have not shared this information with Bella yet, so PLEASE be cautious if we get to see you.  It’s likely that we’ll probably be having a very emotional family conversation after Thursday’s appointment in which I imagine we’ll be discussing Bella’s future.

We’re hurting and, honestly, it’s been very difficult to write this post.  We’re begging God in prayer to not let the worst case scenario become so…we’re not ready to send our angel back home yet.  We pray He forgives our selfishness but Bella just has so much life and joy in her.  Please, please, please pray with us that the biopsy returns benign and absent of cancer.  Please pray that the original tumor stops growing and starts shrinking again.  Please pray for Mommy and Daddy’s endurance and patience and pray for understanding, comfort and love for little Liam – he loves his big sis so very much.

We’ll update as often as we can.  Our greatest hope lays in the promise of God’s undying love for us and for the unconditional and sustaining love from you all.  We’re so sorry we don’t have an uplifting post for you.  Thank you so much for your understanding and your ongoing prayers.  ~Val and Sam