Steve and I made private vows for our wedding. We had a traditional Orthadox Jewish wedding so no we didn’t do them out loud, but we made private vows. They were a bit silly, but we stand by them.

Steve’s first vow to me (and they are in order of importance) is to always “Call Time Warner.” 

I hate Time Warner Cable. 4-6 hour window?! Who the hell has 4-6 hour windows? All of the windows span over teaching hours.  I can’t say to my class “dismissed, I have to run home and sit in CASE Time Warner Cable shows up?!” 

Just saying it (TWC), makes my blood boil. How do single moms do it? How is this acceptable? It is my least favorite phone call,  that is until now. Try calling to get life-saving time-sensitive drugs for your child and it takes TWO HOURS and every minute counts. 

I must have walked 8 miles in a 15-foot space. Pacing back and forth. At one low point, the drug rep told me that they don’t manufacture the drug I’m looking for. That Sloan Kettering and I are mistaken! Said as I was LOOKING at the medicine in the hospital, in my hand, with the company’s name on it. I MEAN….)@(#*)*UW(*&(@3UY(

It was my job to know 700 children and their families. That was MY job. If a parent called me up and asked me about their child, and I replied “not sure she goes to this school. You must be mistaken,” holy shit would the world explode! And this is what parents of children fighting life-threatening diseases have to go through. AHHHH AHHHHHHHHHHHHHHHHHHH

I’m rewriting my vows immediately.  I’m adding some things. I have a few names to add. 

Okay vent session is over.

Back to Jacob.

Today we are back in the hospital. It is routine to check labs. 

We got his labs back and he is at ZERO white blood cells. This is the low of the low. It doesn’t get lower…he has no immunity.

He is getting a blood transfusion now as his hemoglobin is also low. This is all to be expected.

 WAIT! Expected is NOT the right word at all.

I’m sorry future mom. Poor word choice. Erase that word. It won’t serve you.

For the moms walking in these shoes after me. NEVER make promises to your child. I’ve now broken 3. I told him no shots today.  “Everything goes through your tubies” (the port), but you really have no idea. Shots every day now. Painful shots. Shot that sting really bad. The most important thing to know is that once you THINK you know or you THINK you may know the “new normal.” The game changes. It just keeps changing. Expect the unexpected. The only thing you can depend on is your support “wing” (pun intended).

But more importantly…how is Jacob? He’s sleeping a lot. “I don’t feel good.” That is his only complaint. “I don’t feel good.” He doesn’t cry. He just states it and lays. He likes to lay in silence. No talking. Just alone with his thoughts. Then back to sleep.

That’s why I’m writing a lot. He’s sleeping and I just sit here looking at him and the blood tube going into him. Steve fell asleep. Thankful for that. My two survivors snuggled together.

Now…if you’ve read this far. I know you are a good person so I have a favor.

I just have SO many wishes/prayers and I can’t be using them on little things. And now BIG versus little has new meaning. I’m already down one BIG with Steve, and I’m scared to waste them on something silly like the 4th of July.

Anyone got one to spare? Anyone?

I would love for Jacob to see the 4th of July Fireworks! His favorite holiday. He has been making decorations for it. We have flags. We have plans.

The doctors told us that when he is at zero… it isn’t a question IF he will spike a fever, it a question as to WHEN. He has zero ability to fight anything. And when this happens, we go straight to the hospital and move back in. 

There is also a logistical issue. Of course, there is! No easy road here.

 They have closed off all the streets near us for the 4th of July. Having the best seats in the house turns out to come with a price. It will be harder to get Jacob to the help he needs. Thousands of people will be flocking to the parks that border us on both sides. Tens of thousands. Traffic! Street Closures. Hoards of people. People we would need to get through. 

PLEASE NO FEVER TONIGHT. 

PLEASE NO FEVER TONIGHT!

So…if you have a wish to spare and don’t waste your big ones, because I might come back to you again, please wish Jacob the strength to have a great 4th of July.  Do it for his daddy too. Jacob gets his love of this holiday from his daddy.

And below info on blood donations for those who have been asking:

Jacob is O positive. You can donate blood in his name, but just giving in general helps!

HEY “O” Positive People! You can save lives!

• Type O positive blood is given to patients more than any other blood type, which is why it’s considered the most needed blood type.
• 38% of the population has O positive blood, making it the most common blood type.
• O positive red blood cells are not universally compatible to all types, but they are compatible to any red blood cells that are positive (A+, B+, O+, AB+).
• Over 80% of the population has a positive blood type and can receive O positive blood. That’s another reason it’s in such high demand.
• In major traumas with massive blood loss, many hospitals transfuse O positive blood, even when the patient’s blood type is unknown. The risk of reaction is much lower in ongoing blood loss situations and O positive is more available than O negative. Type O positive blood is critical in trauma care.
• Those with O positive blood can only receive transfusions from O positive or O negative blood types. 
• Type O positive blood is one of the first to run out during a shortage due to its high demand.