March 29 - drama!

Madelyn had her monthly appointment at Seattle Children's on Monday.  It was a dramatic day.  There were two issues that were concerning Peter and I.  The first, was some pain in her arms and legs too far away from her infusion to be the chemo.  The second, being a type of sighing or gasping she does from time to time.  She describes it has having trouble breathing.  It sounds like "I need just a little more air in my lungs."  This has been going on for about six or seven weeks now.  We talked to our NP about it last week and decided to wait and watch.  It has definitely been making us worry the last couple weeks.


Our provider indicated the worse case scenario for both symptoms and the best case scenario.  The worst case scenario was a little like getting punched in the stomach.  The pain could be relapse in the bone marrow and the gasping being a relapse of cancer on her lymph nodes.  Our NP did a through examine including spleen and lymph node check and lung check.  Then we headed down for an xray.  She also ran a report on Madelyn's counts for about six months. 


Her counts are not consistent with relapse of the bone marrow.  Our NP told us (something I wan't aware of) that those platelets are finicky things.  If there is a downward trend in the platelets and an upward trend in the white blood cells, then they start to get nervous and order a bone marrow biopsy.  They felt the pain was probably just side effects of the chemo.  They told us to still watch and record the symptoms, but they weren't concerned at this point.  \


We didn't hear the results of the xray back until about 3:30pm - so it was a longggggg afternoon.  Thank goodness the xray was clear.  She said their next steps would be pulmonary tests and an EKG (i.e. a cardiac issue).  Our team thought, based on MJ's exam and on our description of the frequency and situations, that we should wait, watch and record.  So that is what we are doing now.  


What I love about our team at Seattle Children's is that they didn't say "this is what you have to do."  They said, this is what we recommend at this point.  If you get home tomorrow and you don't feel comfortable waiting - even for piece of mind - we can order those tests tomorrow.  Everyone we see in Oncology says "please call us at anytime with any question you might have."  I really, really appreciate this... 


THEN!  On the drive home, Madelyn and Sophia's wonderful teacher Tina called and said that a mother of one of the students had Whooping Cough (Pertussis).  There is also an outbreak of Whooping Cough in both Skagit and Snohomish Counties as reported by the health departments.  You might have seen it on the news.  There are a few infections that are super NOT GOOD for MJ to get and this is one of them.  Also chicken pox, H1N1...  If there is a known exposure to one of these it means straight to Seattle Children's for preventative IV antibiotics and monitoring.  Whooping Cough is usually more of an issue for adults because we don't know to be re-vaccinated.  The vaccination only lasts 10 years so most kids are covered.  Unfortunately, there is one un-vaccinated child at school so we will wait.  Luckily, Madelyn's wonderful pediatrician here in Anacortes reminded Peter and I to get the booster in order to protect Madelyn last year.  Madelyn too had the vaccination, but the trouble with her suppressed immune system is that those white blood cells are not firing with full cylinders.  So we are on self imposed Lock Down right now to be extra careful.  A few weeks at home in the grand scheme of "it could kill her"... is obviously no big deal and a no brainier for us.  If you read this and think, oh wow, I haven't been re-vaccinated... go and do it!  Any of the pharmacies can help you with that.  Keep in mind that once vaccinated it takes two weeks to take effect.  Also people can have Whooping Cough for 7-10 days before showing signs of sickness.


THEN!  Last night Sophia had a 103 temperature and other cold symptoms.  So now we are in wait and see mode for fever!  For most kids a fever is just uncomfortable and you wait it out.  That is what Sophia is doing and she is still, luckily, in a wonderful mood.  However if Madelyn gets a low grade fever it is off to Seattle Children's for us.  I decided to pack a bag for the hospital.  It is sitting in the hallway waiting for us.  I am sure if it is there, we won't need it.


MJs counts were:


Hem 39.0   Plat 283   WBC 2.9   ANC 1,600