Jul 6, 2014

Pregnancy, Type A, Cancer Lite, and Travel Tips…

Special guest post by Melissa...

Our pregnancy was planned.  We did all the “right things’.  We earned our degrees, bought our home, threw ourselves into our careers, and traveled as much as possible.  With sacrifice and hard work, we made it.  And I can honestly say now that our family is exactly where we want to be.  It may look easy.  It surely was not.  And we know the truth.

I am a nurse in a pediatric intensive care unit, so having children for me was a very scary thing.  When everyone else wanted to know the sex, I just wanted to know that there were 4 chambers in the heart. 
I loved being pregnant.  There was just something surreal about housing another human.  I was terrified until the anatomy scan.  Sometimes I guess ignorance is bliss.  Knowing too much has been scary, but also really helpful.  Anyhow, at 20 weeks everything checked out.  There was no “it’s a boy” or “it’s a girl”.  It was even more exciting.  “Here’s the right ventricular outflow track, and the left.  The heart is on the correct side of the body.  Kidneys, yes there are two.  And there is skin over the spine.  Etc.”
Now we could go order the nursery furniture and feel the baby kick and plan our lives without a car in the world.  Until week 22 when Chris had to have surgery to remove a nodule in his neck that we noticed.  And then came week 26 when the ENT guy had us in his office and said cancer.  WTF.  Excuse me?  This was not in my Type A plan. 

For 15 days all we knew was lymphoma.  We didn’t know which type, there are more then 30.  I was happily pregnant and on the ground sobbing.  I wrote down everything we did those 2 weeks.  Lame things like ‘went to Lowe’s” since I was so scared that every time could be the last time.
Thankfully we learned the diagnosis had a 95 % cure rate.  Awesome.  We were so thankful for chemo.  “Cancer lite” as Chris began to call it to make it seem like no big deal, to help keep his pregnant emotional mess of a wife together.



He never needed the chemo.  We asked for another pathologist to review our slides.  I mean the first were read by the best guy in PA, at The University of Penn, but for shits and giggles, let’s just get another opinion.

We now go to The National Institute of Health every few months .  As it turns out, the Epstein Barr Virus, you know the one that causes mono, can appear as a form of lymphoma on slides.  Which means NO CANCER!  Apparently it never was.  Whew, what a relief and also a fright since we don’t know what to expect next.  So, now the NIH closely monitors him with blood work and CT scans and PET scans to be certain that it is just EBV and not Lymphoma as originally thought. 

At each follow up, we are in Bethesda a day and a half.  Our appointment begins at 7 am and ends finally at 3 pm where we hope to hear, everything is fine, see you in a few months.  The waiting in the middle of the day is the worst.  We sit in the cafeteria and Chris generally is quiet or focus’ on not being there (to say he hates hospitals in an understatement).  And I sit in the cafeteria typically fighting back tears because I think he thinks we will get bad news and that’s why he’s quiet.

Needless to say, lymphoma or not, I love this man.  And need him every day.  Our daughter does too.  We have be so fortunate to now have the team at The National Institute of Health on his case.  I have decided to make it my mission to raise money for The Leukemia and Lymphoma Society for all of those people that have not had our luck, and also for us just in case.

 




So back to how I began.  We had the good fortune of having the rug pulled out from under us.  And what it has done has brought us closer together, and has also made us 100 % confident in the lifestyle that we have chosen. 

Our daughter is now 16 months.  And a complete delight.  I will run a half marathon in November to raise awareness and funds for The Leukemia and Lymphoma Society and to challenge myself and honor my husband.  Please make a donation if you are able.  Or complete a fundraiser in our honor. 

Since I will run 13 miles, I leave you with this, which is only fitting given our dreams…13 travel tips with a child <13 months and my 13 reasons to run.

When traveling with a child: 
1. Always rent a house or a suite.  A baby in one room with you and the tv and the phone is not a good time.  Vrbo.com is  good site
2. If flying, choose flights that do not interfere with bedtime
3. Inside the airport take the baby in the ergo (you can walk through security with baby undisturbed, unlike the stroller) and also take 2 bags ( 1 bag for under seat and 1 for over…toys, diapers, wipes, snacks, a shirt for you, and outfit for baby) 
4. At the curbside, check EVERYTHING else 
5. If flying out of Philadelphia, use Winner Car Service, trust me…it’s basically a valet service so you cannot fuss with car seats and such at drop off or even better at pick up 
6. Don’t forget to pack the sound machine 
7. Consider rentals for baby gear where you are going (in Venice, FL we rented a Jumparoo for 2 bucks a day) 
8. The Graco Travel Pack 'N Play is lightweight 
9. Have diapers shipped to your location or pack in car seat travel bag if you are taking a car seat (again check at curbside) 
10. Locate hospitals and grocery stores before you go and take Benadryl and Tylenol in your carry on
11. Have fun 
12. Don’t overplan, be flexible, stick with your child’s home routine as much as possible and you will thank yourself in the end 
13. Bring a sitter, overlap vaca with friends, invite grandma, etc…after all it is vacation and parents could surely use a dinner alone

My reasons to run include: awareness promotion, self challenge, research money, self energy, weight loss, pride, an example for our daughter, strength physical and emotional, focus, dedication to the run and my husband, fun in a group, a new hobby, and a stress reliever.

Ways to donate: