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More MRI Update

We got the phone call late this afternoon with the rest of the information on the MRI.  I am still somewhat in shock and am really struggling.  I am asking for prayers for healing for her, for strength, courage, and peace for Aaron and me, and for wisdom for the doctors. 

Turns out that the tumor that we knew about that we can see under her tongue actually extends up her entire right cheek and goes all the way from her right eye to near her right ear.  It is all intertwined with the muscle, fat, nerves, and blood vessels.  It is possibly inside the bone around her right eye also.  She may get a CAT scan to determine that.  Tuesday a team of doctors - the heads of genetics, neuroradiology, neurosurgery, and oncology will meet to discuss her MRI and try to come up with some kind of a plan for what to do for it.  It is growing and very invasive. 

The MRI also showed that she has a second tumor.  This one is on one of her optical nerves.  At this time it is small and, as for as optical nerve tumors go, not in a bad place.  She will need to see an Optometrist  who will do a vision test on her and then in 3 months she will have another MRI and vision test to determine if it has changed at all.  If it has not, they will do another MRI in 3 months and if nothing has changed, she will get on a schedule of having MRI's every 6 months to check it.

Tomorrow her nurse will call the hospital concierge to schedule 3 appointments the same day, preferably this week, but if not next week.  Those 3 appointments will be 1) the NeuroFibromatosis Clinic, 2) the Ear Nose Throat Specialist, 3) the Optometrist.

"The Solid Rock"

My hope is built on nothing less
Than Jesus' blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus' name.

When darkness veils His lovely face,
I rest on His unchanging grace;
In ev'ry high and stormy gale
My anchor holds within the veil.

His oath, His covenant, His blood
Support me in the whelming flood;
When all around my soul gives way,
He then is all my hope and stay.

When He shall come with trumpet sound,
O may I then in Him be found,
Dressed in His righteousness alone,
Faultless to stand before the throne.

Chorus:
On Christ, the solid Rock, I stand -
All other ground is sinking sand,
All other ground is sinking sand.

Love, Dawn

Photo of Susanna

MRI Update

Thursday started early.  I woke up at 4:15 and fixed Susanna breakfast and then I woke her up at 4:30 and gave her oatmeal with cream and butter added to make it as filling as possible.  I knew she couldn't eat again until after the MRI.  Then I put her back down to bed where she slept until 9:00.  I went back to bed, too, although it took me until 6:30 to fall back asleep.  Aaron and I woke up at 7:30 and then woke up the rest of the children at 8:00.  We ate breakfast together and then all got ready for the trip.  We got on the road about 10:00.  I nursed her at 10:30 (counts as clear liquid) and she drank water from her sippy right before 11:00.  That was the cut-off time we'd been given as we were to get her checked into Radiology at 1:00pm.  We've been teaching her sign language and it made me so sad as during the drive she kept signing "eat" and "drink" and "milk" at us and I had to keep telling her that I was sorry but we couldn't do that.  Once we got to Cincinnati, Aaron dropped Susanna and me off at the hospital and he took the rest of the children to the zoo.  We got checked in no problem and settled in for a long wait.  I was able to be with Susanna through them putting her under with some gas.  Then they took her off for the IV to give her general anesthesia and for her MRI.  She was scheduled for 5 scans - neck, jaw, 2 of the face, and brain.  They were able to get the IV needle in on the first try, which I was glad about. They were worried that with her being so pudgy they might have difficulty with it.  They had estimated the time of the MRI as being about 45 minutes, but it turned out to be closer to 1 hour and 20 minutes.  After kissing her good-bye, I first went down to the cafeteria and ate.  They were running late in radiology, so she didn't go into sedation until about 3pm.  I hadn't eaten anything since breakfast, as I didn't want to eat in front of her when she was so hungry.  After eating, I went to the Chapel and spent time there just praying and reading in Psalms.  I had a little pager with me, the sort they give you at restaurants, and when it went off, I went straight to the Radiology Recovery room.  I returned the pager to the nurse at the desk and then went over to where Susanna was laying.  I had requested that they page me just as soon as she came into Recovery, so we spent about 15 minutes just watching her sleep.  The nurse told me how she would wake up groggy and fussy and other children were in the room demonstrating just what she meant.  However, they didn't know that Susanna is the happiest most laid back baby I've ever known.  :-D  When we woke up Susanna by sitting the bed up some and then rubbing her and kissing her, she woke right up.  She looked around trying to figure out where she was and then smiled.  She waved hi at the nurses (she loves waving at people) and drank some water from her sippy.  The nurse said I could hold her, so I sat in a chair with her and she gave me kisses and drank some more water.  There wasn't even a moment of fussing!  The nurses thought she was just unbelievable and asked if she's always like that.  She sure is!  :-D  They let us go pretty quickly and Aaron picked us up outside of the hospital.  We drove to a hotel just inside Kentucky.  She ran a fever that night, but otherwise did not seem to have any ill effects from the general anesthesia.  The next morning, we went downstairs and enjoyed our free hotel breakfast and then all swam and played in the pool together.  Susanna was outfitted in a swim diaper, a onesie, and an itty bitty life jacket.  She loves to kick her legs around in the water.  Then we all went to the Creation Museum.  (www.answersingenesis.org)  We passed Ken Ham leaving as we arrived.  That was neat!  We had a wonderful time at the museum.  It is SO neat!  I called over to Children's twice to see if they had the results yet, but it wasn't until about 4:15 that we got the call.  Of the 5 scans she had done, we only got results from the jaw one so far.  We'll find out about the rest of the scans on Sunday.  Susanna has a plexiform neurofibroma tumor under her tongue.  It is fast-growing.  Her nurse is going to schedule her on Monday for an appointment with an Ear Nose Throat specialist.  Our two immediate prayers at this point are that it can be surgically removed and that it is benign (non-cancerous).  We are also praying that the other four scans do not reveal any additional tumors.  Her right cheek is still visibly swollen, but we are praying that it is due to the known tumor.  Thank you to everyone praying for her!  Thank you, also, for all of  your encouraging comments that you leave for me!  Those really bless me!

Love, Dawn