Week #20 @ The Dahlhouse

HANGING out with this little one.  She missed three days of school due to a horrible cough.  When Miss B gets sick, she gets asthmatic.  It requires 2 inhalers, honey, cough meds, Advil and a pulse ox monitor for me to be able to treat her. 

LOOKING at buying a new laptop.  I have some funds to find a laptop for my VIPKID business.  It would really be a blessing to not have to haul the computer up and down the stairs. 

PAINTING with this fun group of ladies from church.  It was so good for my soul to go and just be.  There is something very therapeutic about art. 

CHAPERONING a kindergarten field trip for B.  Matthew tagged along of course.  It was a long day. I am feeling impatient at this point not having heard any results on my pathology test.  I admit to checking my phone several times this day for a missed call or email.

 LUNCHING with my mom at McMenamins Edgefield for an early celebration of my birthday.  After we went shopping, just the two of us.  I love our yearly tradition. 

CHECKING into the doctor's office...again.  This time with Man Cub.  He had been super grumpy and digging in his ear.  Sure enough...ear infection. POOR guy.  Antibiotics all around. 

 ENJOYING his amazon delivery from Mimi!  He LOVES it!  Anything with wheels. 

No post is complete with a seven year using a golf club as a boom mic!  LOL.  I think they have watched too much reality TV. 

At the end of Week #20, I am still waiting for the pathology results and I may or may not have said a few swear words when talking with Mark about my frustrations.  Limbo is not a good place for me.  Knowledge is power.

The Dahlhouse: Week #19~The Call No One Ever Wants to Get

Waiting for biopsy results,  is a nerve wracking experience.  So when the doctor's phone number flashed on my cell phone screen, I immediately knew this was not good news.  I got the call I had been terrified of getting for years.  The call that I have cancer.   He informed me that the mole I had removed off my arm was benign and one mole off my shoulder was Melanoma in situ.  In situ is classified as stage 0, meaning the cancer is sitting on the top of the skin.  It has not spread, and it is all in one place.  The treatment is surgery to remove more skin surrounding the melanoma and test for clear margins.  Once the margins are clear, the follow up treatment is more frequent skin checks.  In one five minute phone call, I found out I had cancer and was scheduled for surgery the following week.  My head was spinning.

I had a few days of a pretty good pity party.  I vacillated between being extremely thankful it was caught so early, and feeling angry and scared (mom to four kiddos). 

Tuesday, May 9, Mark and I went in for my surgery.  The doctor removed a lot more skin than I was expecting.  Here I am all marked up so the surgeon knows what is being removed.  They used a special light in marking up my skin.  My poor eyes, I had only had one break down in front of the doctor by this point. 

*NOTE: We choose not to tell our kids about my skin cancer at this point.  They know I have moles removed, as this has been happening since I was a teenager.  They knew I had have some additional skin removed but for the time being...they don't need to know.  Especially since I have two kiddos with anxiety disorders.  If you know our family personally, please do not mention this to them as they won't have any idea.  Thank you so much!

Here was my shoulder the night after the surgery.  Out of all the difficulties of this process, not being able to hold Matthew with my right arm has proved the most difficult challenge.  After the skin was removed...I found myself waiting again.  For pathology results.  Waiting to heal.  It has been a lot of waiting. 

I think that one of the most interesting lessons I have learned with all this is that life continues and moves on.  It didn't stop because I found out I have skin cancer.  I continued to teach classes, carry Matthew with one arm, go on a field trip, take the kids to a rabbit show, laugh, go out with friends. 

We even sold our Honda Odyssey during this time period as well. 

I celebrated Mother's day with this sweet girl and her class a few days after surgery.

The three olders and I went to a rabbit show at Clark County Fair Grounds. 

I even sported my 4H shirt and had a pretty good day being with my kids. 

At the end of week #19, I was still waiting on the edge of my chair to hear if things were "all clear" or if I was going to have to undergo another surgery. 

He Will See

Every three months Luke has an eye appointment at CASEY EYE OHSU in Portland.  For the last four years, like clock work we take him.  They check his vision, eye pressures and optic nerves.

At times they have often thrown in a specialized test or two, or three to look at all possible causes for Luke's childhood onset glaucoma.  (Remembering the detailed retina testing).

This past Tuesday, was another one of our appointment days at CASEY.  It is nerve wracking.  I always wonder what news we are going to be given.  Too many times we have sat in chairs receiving news that we didn't expect to hear.  Too many diagnosis' to process.

The doctor said Luke looked good.  So good in fact that if his next round of visual fields are good they are going to back off the appointments.  We will get six months between appointments instead of three. She said she would no longer worry about Luke.  Luke's eyes will never be "normal", but the doctor is considering the possibility that Luke's optic nerves are perhaps genetically abnormal, instead of something causing them to abnormal.  Which means whatever sight he lost has been that way since birth.  And she won't expect his condition to cause more sight loss.  A MIRACLE!

Luke will SEE.  He has less of a chance of losing anymore vision with the new information coming from the doctor.  Where as years ago we struggled with thoughts about if Luke would go blind, we are now allowing ourselves to imagine a future where Luke is NOT visually impaired.

Just last week I held Luke as he sobbed, "Mom, I wish God made me different.  Why did he make me with glaucoma? You don't know what it is like to lose your vision."  It is so true...I don't have a clue what it is like, but I know God doesn't make mistakes, and HE made Luke absolutely perfect.  I just happen to have a front row seat to watch a MIRACLE being performed in the life of my son!

MSP Meltdown

I am and educator and a mother and I will be the first to confess to you that I HATE state testing, especially for those sweeties that have special needs.  Whatever they have been putting in the water at Luke's school regarding the state testing MSP (Measurement of Student Progress) has really hyped him up.  He is wound up so tightly it hasn't taken much for him to blow up at any of us. 

 

His test anxiety has really been unlike anything I have seen from him before.  He just keeps saying, "I just want it to be over mom!"  His eyes fill with tears and I stand there helpless to fix it, make it better or help him succeed. 

 

I decided to call Anthony (Luke's therapist at Family Solutions) after Luke's first major meltdown this weekend regarding the ridiculous state testing.  Seriously...Anthony.is.amazing!  Hands down, perfect match for Luke.  Anthony understands Luke, and I was thanking my lucky stars he had lots of ideas to help his test anxiety.  A shout out of thanks!

 

First...we made a list of all Luke's worries regarding the MSP.  My heart sinks at what my sweet Luke thinks about this test. :(

 



Luke writes: I am worried I will get all the questions wrong.

I am worried I won't go to the 5th grade.

Worried I have to stay after school 30 minutes if I don't finish on time.

President going to get my test scores.

Talk during the test.

Held back.

Won't pass the test.

My fifth grade teacher will be cross with me (regarding poor test scores).

 

Seriously...my baby has so much worry over a stupid, stupid test!  I just want the makers of this testing to come spend some time with my son and decide if this test was in his best interest.  And while he does have accommodations, I don't know what they are really doing.  Are they really accommodating for him?  The way he needs to be?  It is these moments that I wonder am I doing the very best for my child?  Am I putting him in a situation that isn't good, but one that I think is good?  I am struggling with all this self doubt.

 

Anthony suggested we label Luke's worries into 3 categories (true, unsure, and false).  Most all of his worries were false.  I then had Luke erase them and told him he needs to erase those from his mind (because they are not true).

We made a step-by-step plan of his test day so he would know what to expect.  Luke is concrete.  He thrives on lists.

 

Finally Anthony suggested a positive statement that we can keep saying to Luke over and over so that he has something to repeat to himself.  Most of the statement was Anthony's idea but we tweaked it at the end with a little Luke language. 

 

I am just praying we survive the testing processes, I could careless if he passes the stupid tests or not! 

Appointment Update and Frustrations

Luke's appointment was this afternoon.  It was relatively quick and we were home by 5pm.   We rode the elevator to the 11th floor, where they now know him by name.

He is independent and wants to check himself in.

We wait a few minutes and are called back.  After a quick vision exam and pressure check the doctor comes in with a medical student.  She reviews his pressures and then I ask about his vision loss.  She says according to the last 2 visual fields he has "lost a lot of vision".  According to the doctor, Luke should not have lost the amount of vision he has for the eye pressures he has.  All the tests on the retinas came back normal, which she said was good, "but it still doesn't explain what is wrong with Luke."  WONDERFUL.  Now, can some one please explain to me WHAT IS WRONG WITH LUKE?  She adds, "Perhaps we will not ever know.  I have NEVER seen a case like Luke's before."  Again WONDERFUL.

 These doctors at Casey Eye OHSU are the best of the best.  What is going on?  I can feel the heat in my face rising.  My heart begins beating faster.  "So now what?" I ask.  Dr. Edmunds explains that she is going to consult with Dr. Penessi and then consult with an neuro-opthomologist and then if they still can't find any other cause for the vision loss they will only assume the vision is loss is due to the glaucoma and nothing else.  In the mean time they have scheduled another visual field test (because she doesn't believe the last two are accurate; even though they are  identical).  So here we go again.

I feel that after 18 months of non-stop doctors appointments and testing and visual fields and more testing, and photography and more testing and eye drops and more testing we are no closer to knowing what is wrong with Luke than the day we had our first appointment at OHSU.  UGHHHH!  It is just so frustrating.  I want answers and solutions and a fix (all of which I know we don't have and may never get).  I have to find peace with that and continue on.  I have to continue to advocate for what he needs, what he deserves and for the best medical care I can get for him.

This road has been long (and will continue to be long) and I need to just keep walking, one foot in front of the other, knowing that God KNOWS every hair on Luke's head, every dream in his heart, and every issues, diagnosis and disability that he may face.  I have to rest in the PEACE that surpasses all understanding that guards my heart and mind.  I have to live as an EXAMPLE to my children by standing in FAITH in the midst of uncertainty, and TRUSTING God to direct our path while BELIEVING that God has the POWER to HEAL, and that HE is still a God of MIRACLES.