Making Memories after Diagnosis

 There is a certain urgency when a child has been diagnosed.  We rush to do so many things. Memories have to be made and made NOW. 

What if these are the last of the memories? What if we don't survive long enough to go on our Make-A-Wish?  What if there is no time for  high school and college and marriage and the first job and the first car and the first broken heart?  What if? It is a panic that strikes the heart of each and every parent, grandparent, relatives and friends.  We have to make memories NOW.  We have to take advantage of this time, this moment, this......
everything. 

Well, take it from an expert, there are plenty of memories being made each and every moment.  Each day, each blood draw, each visit from the Child Life, Social Worker, Ukulele Guy.  Now granted not all the memories are good.  Treatment will erase many memories, but there will be memories. They will be a different kind and those that share them will be altered by the events. But  often there are bits and pieces of good memories.   

We are altered to our very core.  On a cellular level.  When your child faces amputation, total body radiation, red, blue, yellow chemo, and endless invasive procedures, bone marrow transplants,  it has to change you.  As you watch people you love perish and their loved ones writhe in  pain for moments, and hours and months and years, it is hard not to be transformed. 

Human beings are made up by the bits and pieces of who we are and what we learn and experience in life. We absorb things every day. We also are a product of what we remember.  Often we are a bit like Kimchi and need to sit about and wait until we are done.  But eventually there is a good end product.

The moment we hear the words "Your Child Has ____________________ we begin to incorporate the new "Memories" into who we are and will become.  

 It is a good reminder that we should value, treasure and work on this every single day....  

So Now What?

So, Mary-E had a discussion with Pearl Anne today.  She explained to her that she was at large and in charge.  She was up for the job and had done a really great job doing her work as the new immune system.  She explained that things were okay and she had been taking care of things just fine.  No need to overreact to every little thing.

  A scarf was not to be feared.  No reason to get all rashy.  A bit of butter on toast was nothing to worry about.  Sushi is really a good thing to be embraced.   No reason to get the gut upset.  There were going to be many battles to be fought in the next few months and years.  She was ready. She has had 2. 5 years to settle in and things are good. 

Now we wait.  Now we wait and see.  The last time the "last" dose was taken there was a party. There was a celebration. There was laughter and relief and joy.  I could barely get out of be this morning.  I have taken to watching "Keeping Up with the Kardashians".  
I have to get a grip.  I have to remember she is 30 months post transplant.  She has gone 30 months without a relapse.  We are half way to the five year mark. The point where most cancers are considered "cured". I should be relieved she has had no signs of any cancer.  

I don't know how to be relieved and happy about this.  Trust that is gone for good was so shattered with the last relapse. 57 months..... 7 years of remission.  I don't know when I will ever believe it is gone for good. 

As always, I will work through this.  It will be okay. I will be okay. She will be okay.  I just have to adjust my expectations and know that Okay is Okay.  I feel like we have been through a fire storm and and hurricane and then the tornado touched down to clear away the rest.  Just not sure how to recover from this.  Pretty daunting.  

I will sit with this for awhile and count my blessings and watch a few more episodes of bad TV.

Life and Death keeps happening.

I was trying to figure out how to proceed yesterday.  Kid has been sick, cough, really bad cough, ache body, not out of bed.  I had a touch but with some ossillium and some long hours of sleep, I was able to knock it back.  Blessings of having a completely strong, healthy immune system. 

So she is not Emergency worthy. She should not be a Seattle Children's spreading this thing and is NOT that sick.  She has a cold.  So on day 5, I make an appointment with our family practice.  Nice new doctor.  She really is and it takes her a while to realize we aren't kidding when we start to say things. 

Yes, leukemia twice, Double cord blood transplant and menopause.  Port, blood clot history.. she feels the thyroid and says it feels fine.  We mention there is not working thyroid.  I am sure she thought we were (Secret Weird Patient).  So she suggests and X-ray, I think it is over kill but after a call to the SCCA they want one. We ask about going to Children's because it is close but no.  Then they ask if they took a nasal swab.  Of course they didn't.  They don't do that in real doctor world.  

So basically we failed to get the job done. I can see the call is coming today to go back to either Children's or SCCA and get swabbed for Strep and to snot in a cup and there will be cultures and more investigation.  Her heart rate is 122 and that tells them her lungs are working. I don't want to get too close to the hospital because we know what happens there....


So in one world I have a 21 year old with a cold.  Feels miserable, just home from college.  But because she has spent 10 years in Cancer World, I take a kid that clearly has a virus to see the Doctor.  

In Cancer World, it is serious.  It could be, pulmonary embolism, weird pneumonia and let me tell you.  They will culture and swab and image her to death.   So since we have one foot in and one foot out... today we make the calls and figure out what to do.  
She slept last night so I think she will be fine.  But then I am reminded how fragile these kids are and how a cold can take you down and not in a good way. 

So while I am whining about this stupid cold and how inconvenient all of this can be Momcology brings us Lulu.  A month ago she was going to prom, she was graduating she was spending time with her family. 

5 days ago she was sent to the ICU with high fever and poor lung stuff and she is so so sick.  This was her mom's post this morning.  


Lulu Ysarua Martinez Has Collapsed Lungs And crashed at 430..they now have her on stomach and adjusted ventilator to keep lungs open longer and less pounding on the lungs which is causing inflammation. .doctors said next hours critical. ..looks like to save her she will have to go on the ecmo machine. ..they told us she doesn't have the capabilities to heal on her own ...will update later.

I don't know these people, I will probably never ever meet them.  I will however remember that there are two paths on this road of life.  While I feel we have missed out on so much because our life has been stagnate and boring and complicated by this thing called Cancer and life has passed us by.  I will also remember Death has passed us by.....

Prayers/Chants/Rants/ for Lulu.... A lovely lovely young woman who wants to live her life like a normal person.... No on her stomach in a hospital bed surrounded by monitors and other such invasive things.  

Family and Friends can only stand it so long.

This is not a criticism but more of an observation.  I am reading through my old blog posts and realize that over the years people have left our lives.  Some have come back and forth and other's have headed in new directions.  As every Momcologist can tell you, it is hard, so hard to hang in, day after day, week after week of what seems like an endless road.  

I read post after post of people confused about where their friends have gone.  How a family member can think one visit is enough.  They have filled in that box and done what they could to be supportive.  Usually at the beginning of the much too long and seemingly endless journey.

 I do understand how it happens.  If you watch TV, it seems so hard to believe curing cancer can go on year after year after year.  That the family never quite believes it is done and they worry endlessly about silly things. No movies, no big crowd events, no unvaccinated kids allowed.  No concerts, no, no, no, no.

We say NO so many time people stop asking. They stop trying to do stuff for us because we say No as a matter of course.  We become un-reliable. We stop even planning anything.  No plans to go out to dinner. No plans to meet people at a fun event. No plans to even have coffee.  It is so hard to grab hold of the concept that we can not make plans.  

I remember every time I tried to go to a play or a musical or a birthday party, I realized it was a very big "Maybe'.  No longer was there a way to plan or project.  Hey, we even had to cancel the Make-a-Wish trip to Venice.  No easy feat.

Your family and friends sort of get it but you are no longer on the same path.  No longer are you including people in everything you do. No longer can you be relied upon to bring the potato salad.  No longer can be the person to show up with the balloons for a party. 

I have been very lucky with the support my friends and family have given us.  There have been losses but those are part of life.  Some left because they couldn't stand it. Some left because they couldn't believe we were such whiners.  I think most did not have the energy or place to worry up close.  I know we are surrounded by prayer and given lots of support in ways we will never know.  St. Joe's with organization of Mr. Boyle took care of us for a long long time.  As Meb always says: There are some great cooks at St. Joe's.  

Not everyone has been so lucky. Lots of people in Cancer World that feel abandoned and alone. I never have.  I have found that as we emerge again from the protective Cancer World Cocoon they are ready to join up again and travel together.  


We have to realize we have been gone. Gone from the real world for a very long time. Sort of hanging around in space waiting.  Sort of like the space program. Everyone is excited about the launch and the landing.  Not able to keep too excited during the 3.5 years it takes to get to Mars.  It is human nature, not awful friends or family.  

Just think, if we had a choice we would hang out at a hospital using Purell every 20 minutes watching bad TV....   Heck no.  And it's okay. 

Our friends are still there, waiting for the all clear call.  

Sometimes you Need the Black to appreciate the rest of the view.

I realize now that when Cancer Part I was happening we were in our own little world.  I realize now that we spent very little time at the hospital.  We made a few friends but it was very much a solitary journey. 

Cancer Part II is not solitary.  Because it is so so intense, we have met lots of families, the internet has connected us with lots of families and it has put us in a very different place.  

I have been pondering my newly gained knowledge about Post BMT relapse.  I was not quite myself in class the other night and someone asked why.  I tried to explain without being DebbieDowner and they asked whether or not I "KNEW" Owen and his family. 

I made me think about the question.  How do we know people? What does it take to know someone? Is it enough to talk on the phone? Have coffee with them?  Is it enough to spend a vacation with them, a night in the hospital?  How does the internet connect us?

I think some shared experiences make the connection.  We "chat" with people all over the county and in my case world.  We "spend time" with people online.  I am always drinking coffee so maybe there is a connection.  

We learn and grow and expand our knowledge and human connections with the stroke of a keyboard.  Our world is so much more complex given the expansion of the internet.

It fills in the blanks of the canvas.  Sometimes the spaces filled in are black....  But the blackness is what makes the rest of the world come to life. 

Five Years is not Enough

We all make deals with God all the time. If you help me pass this test, I will say 10 Hail Mary's a week.  If I pass this test, I will never swear again.  I promise to do anything to make this nightmare go away, I will even fold the laundry.  (you have not idea how bad it has gotten)

My daughter should not have cancer, I want her to graduate from St. Joe's and go to Holy Names and graduate from there... that is all I want.  I want those 5 years they talk about.

They always talk about 5 year survival rates.  When the words are tumbling towards you and your brain is in a rapid river and all you want to do is hear good news, 5 years sounds like a gift.   It is something to hang on to as your whole life is being dismantled and you are rushing down the river.  5 years. 

Well let me tell you from deeply felt experience, I want 50 years.  5 is not cutting it.  5 years off treatment flew off the shelf so fast I didn't even notice it was gone.  Whossh, and it was gone.  From what we have been told, it takes 5 years to recover from the treatment.  That should not be counted as the 5 years.  

So the docs need to buck up and they need to look out into the future.  They need to be more optomistic.  They need to re-write the script. 

50 more years...... 50 more years.... or 60.  I am not too picky or demanding. 

Rebecca

Day 48ish.
Sister gave her bone marrow.  Mostly matched but not all the way. 7 months off treatment before relapse.  Trying to get her life back. Trying to be a normal kid.

She has been in ICU for more then a month.  Kidneys, Dialysis,seizures, weird blood pressures, spleen unhappy, sepsis.  Lots of scary things.

I spent some time with her mom when I was in New York. We chat on occasion and I try to answer the questions.  There are a million questions.  When did this happen to Mary-Elizabeth? How did you get over this problem? When did this start to happen for her?  How did you handle this....?  Will she ever get her life back?  Boy if that is not THE question.

It is so hard.  It hard on the kids, hard on the families.  It is just hard.  We all are looking for a way to handle the hardness.  One we we do it is to help other's but it adds a layer of difficulty with every connection.  You don't always want to share what you know and how you know it.  

We were down having Hector the Magnificent draw MEB's blood.  There was a mom and a little girl, 7ish, sitting with her American Girl Doll named Lily. Lily was all garbed up and pasted up ready for her EKG and a blood draw.  The little girl was explaining to Mary-Elizabeth how she was brave and didn't have things done to her that hurt very much any more.  The mom was so happy that they were celebrating 4 years off treatment.  I looked at Mary-E and she looked at me and then returned to testing.

Later I complimented her on how she had not said anything.  We both knew there was no reason in the world to share our story. 

When you are sharing, you always hold back the scary observation.  The bit of wisdom you have garnered along the way.  The words you never want to hear spoken outloud.

Sometimes it is important to just listen, and pray. Today after I heard Rebbecca was having some Liver issues, I talked to the third grade I was teaching.  I explained a bit about Leukemia and touched on Bone Marrow transplants.  I told them about Rebbecca and told them I had promised her mom they would say an extra prayer for her.  I had told Rebecca's mom 3rd graders prayers have great power. 

I think they do.  I think the little ones have such strength and purity of belief.  

We said a prayer for Rebbecca at the end class and Grace said she would mention her tomorrow.  Grace is in charge of prayer this week and she wrote it down.   

Special Powers........

Both ends of the Spectrum

Mom has been sick.  Mary-Elizabeth is sick.  I have been caring for both of them.  Seems perfectly  normal but I wish they would quit tag teaming me.  I really need them to need me one at a time. 

I had promised Belle that I would be there for Karianna's trip to the "New Parts" guy but I knew when I said it, it would not be reality.  After a bit of time, Belle knew it would not work and we sent "her brother" Alex to be the voice of reason.  There are times there is need for someone else to be there and tell you it is okay and we will get through this. 

Alex has that calm Foster demeanor and the Lanham sense of humor.  That is ever so helpful.

Mom is feeling better and going to leave the house because it is Housekeeper Monday.  She is going put the dog in the car, drive to a breakfast place and have breakfast.  Big steps for her.  I don't think she has driven for several weeks, maybe months.  She should do fine. 

Mary-E is fighting off the needle pokes.  She is feeling well enough to simply tell them "NO" to more than one poke a day until she gets her port.  She has taken on her own care with a new sort of verve... I can tell she is feeling better.  

They both are feeling better.   I can turn my total focus to School, Parking Permits, and maybe even a UCard.  How cool is that.... 

InFLUenza....

Boy.... is this a serious illness.  I now understand why people died. I should know better.  Most people think the flu is that nasty vomiting thing.  Wrong, Wrong, Wrong..  It is more likely to be a bad burger or some off may.  It is Norwalk virus sort of thing.  

This is not the same thing.  It is 

INFLUENZA

Questions & Answers What causes influenza? Viruses cause influenza. There are two basic types, A and B, which can cause clinical illness in humans. Their genetic material differentiates them. Influenza A can cause moderate to severe illness in all age groups and infects humans and other animals. Influenza B causes milder disease and affects only humans, primarily children. (MEB has A.  We know this because the hospital LOVES to culture stuff.  The rest of us are out of luck we have to guess.  Alergies, cold?  Sort of a Crap Shoot.) How does influenza spread? Influenza is transmitted through the air from the respiratory tract of an infected person. It can also be transmitted bydirect contact with respiratory droplets. (People, keep your secretions under control!) How long does it take to develop symptoms of influenza after being exposed? The incubation period of influenza is usually two days but can range from one to four days. (If I had it, I must of caught it on the plane.  I wonder if Laura Breshock was sick, because we were on the same plane) What are the symptoms of influenza? Typical influenza disease is characterized by abrupt onset of fever, aching muscles, sore throat, and non-productive cough. Additional symptoms may include runny nose, headache, a burning sensation in the chest, and eye pain and sensitivity to light. Typical influenza disease does not occur in every infected person. Someone who has been previously exposed to similar virus strains (through natural infection or vaccination) is less likely to develop serious clinical illness. (We were both vaccinated... What is up with that!!) How serious is influenza? Although many people think of influenza as the "flu" or just a common cold, it is really a specific and serious respiratory disease that can result in hospitalization and death. In the United States, the number of influenza-associated deaths has increased since 1990. Influenza disease can occur among people of all ages; however, the risks for complications, hospitalizations, and deaths are higher among people age 65 years or older, young children, and people of any age who have certain medical conditions. (BMT patients!!! on two kinds of immunosuppresents?) I have been watching this bug work on my poor daughters body. She is so fragile physically and emotionally. She is being really mean to her mom and that is good sign but then it tells me she is really scared.  She has been dealing with a dry hacking cough for two weeks. She is exhausted, having a hard time sleeping and her lungs are not working very well.  Now she has some sort of red bump on her arm... Because life threatening virus's are not enough.  Now I have the sore throat.  Very dull present and uncomfortable.  Yuck.   I don't want to get sick again.  It is just time to stop all this nonsense.  I have school starting tomorrow. Mary-E has school to do.  A Circuit's final and some deep philosophy reading and writing to do.  We need this to be done.   Now.... Please.  2013 is beginning to make me mad!!

 

I am in control of the Universe and it does fall apart when I am gone.

I left on the 26th for Eugene.  Mom was gimpy.  She had taken the 25 pound turkey out of the over by herself and twisted and tore a muscle.  The big one.  When questioned about it, she simply pointed out she had never needed help before.  So I mentioned that to Mary-Elizabeth and she said that was just like Me.  I figure I have a few more decades to lift the turkey.

I spent a few days with mom.  We left the house a couple of times.  Housekeeper Thursday and Dentist Friday.  We had lunch at our favorite tomato basil soup and some other yummy things.  I helped with the dogs.  Mia needed no walks with Lily and Tucker around.  There is so much with the toys and the socks and other things. 

Mom was walking with a walker but after  a few days she was able to walk a bit more.  She had chairs strategically located and has most things worked out.  One in the kitchen to keep an eye on the coffee, one by the door outside to keep the dogs happy.  One in the dinning room so she can walk around the table a few times to get stronger. 

I was there to pick up some of the tasks it takes to make life better and running smoothly.  It seemed to work. I has no particular time for my return.  I knew I had to be back on the 6th so I could start school again.

So what happens, Mary-Elizabeth was left with the house and a cold. I had the dogs and there was no real projects to do. So I left.  She coughed and slept and spend some fun times with friends. She even went to a movie.  Life was good and then......

Bad cough became horrible cough.  Sore Throat and more coughing.  A chest Xray and some more coughing.  Nothing really showed up.  Some snotting into cup and then more coughing.I received a call about 3:00 am about a child needing to go to the ER.  Or sorry, ED (emergency is more then a room). 

Anne had a great adventure.  She was very upset as they tortured my daughter while trying to get an IV in for the CT scan.  4 times, no numbing, no nitrous, no......  I don't even want to think how bad it was.  Tears, pain, big pain. 

There will be on more pain if I can help it.  I want a line.

I am so upset by all of this.  It is so hard to see your child tortured.  She is so strong and so worried about all of this.  I am sure this is not as bad as it feels but it is not good to be back at all.  They will fix her and it will be okay and she will get better and we will move on with getting past this year.

It is all my fault.  I went to my class reunion and that caused a blood clot.  I go to New York to hang out with Mick J. and it causes an patient stay......  It is me.  It is not cancer or Pearl Anne it is me.  If I am not around to stomp on the trouble causers, there is a problem. 

I have to remember Pearl Anne is only a year old and she is running around in the body of a young adult.  The two of them can get into a lot of trouble and they have.  Oh have they been out of control.  Well I am back and I am not going any where.   We are getting things under control!

Oh, well live and learn.  I will try and sneak out a bit but leave when Pearl Anne is better behaved.  She can behave if she does not know what I am doing. 

We are having a good time visiting with everyone.  We were most pleased to know that they have fresh Satsumas for my poor baby.   That made me happy.