And so it begins . . .

And just like that . . . it's time to pack up and go.


My mom has been feeling well and looks great. We've been taking a walk once a day--its a nice way to connect and keep us both active. She's been home, being creative, and out and about, within reason. We even headed to the delicious little bakery in San Juan Bautista on Saturday with the kids in tow.

My mom hasn't had much news from UCSF in the last two weeks so she called to check in. They asked if she could be there tomorrow to get a pick line in and start melphalan. Just like that! One minute you're eating lunch, the next your butt is in high gear to get ready for an extended hospital stay.

BAM!, a smack upside my head--that is pretty much how I feel. It's so easy to forget (or in my case, ignore) what is up ahead. My mom and I have one of those relationships where we talk every day, sometimes several times a day. We do lunch, we walk, we sew . . . together. We'll talk or text, but knowing she's not home is the hard part for me. I'll miss her.

She's really upbeat, however, this is simply my gripe. She wants to get it over with so that she can get through the tough part and be done. I want that too. So I'll take the kids over there tonight to say goodbye for now--they'd be devastated if I didn't.

Waiting for transplant

My mom was able to harvest 6.5 MILLION stem cells! The body is an amazing thing.

Pre-haircut powwow

My mom finished up on Wednesday, had the catheter out, and made it home in the evening. Now she'll stay at home for a week or two until her counts go up. She didn't need a second transfusion although her platelet count was borderline. She is healing slower than normal for her, but normal post-apheresis. She still has to stay away from people (large crowds); otherwise, use common sense.

On Wednesday night Samantha started crying during dinner. She was having a difficult time just knowing that my mom was at UCSF. I think a lot of it had to do with not being able to see her and touch her. So I texted my mom and asked that she send us a picture. Samantha's spirits perked right up once that picture of my mom came through.

Thursday was the first day in over a week that my parents didn't have to drive up to San Francisco. They slept in! My mom asked if Samantha would be willing to skip ballet that day--her hair was falling out and it wasn't going to wait.

I took the kids to my parents house to give my mom a Mohawk. Then they shaved her head. She thought it might be easier on the kids--she was right.

Samantha's turn

Alyssa's turn (with Papa's help)

Lovingly--my dad cutting my mom's hair

Gel!

Touching Gammy's buzzed head!

My girls and my beautiful mom!

So now we wait until she has to go back to UCSF to receive her stem cells. Then she'll stay for a few weeks. Until then we intend to spend as much time with my mom as we can. 

At least once during the school week I find myself exhausted to the point that I don't even attempt to consider dinner. My typical crash-and-burn day is Thursday nights. This week it ended up as Friday.

Al came home from work, Samantha was playing on the computer, and Alyssa and I were playing Hidden Puzzle games on the couch while the contents of my purse were scattered on the living room floor. In the middle of that purse cleansing I found a gift card for Papa Murphys--hooray! Dinner!

I'm trying to be much better about budgeting this year. In am attempting to keep my exhaustion from resorting in more costly pizza nights. I don't like resolutions--I don't keep them. I consider this a habit change so maybe I'll follow through. I also figure that we'll waste less food.

I will admit that on average we have "breakfast dinner" once a week. This is the girls favorite dinner, but Al and I get tired of it. For the last few weeks I've been making quiches for me and Al. I bought quite a few pie crusts during the holidays and froze them. I have been using one recipe, modified for lactose intolerant folks (Lactaid instead of milk and Parmesan cheese instead of cream cheese). Then I throw in the kitchen sink--I use whatever vegetables we have and chopped deli ham if I'm really lazy. Al and I eat it for dinner and breakfast and any time in between. Hot or cold, it's my favorite food of late.

The original recipe can be found here: http://www.pinterest.com/pin/249035054368093250/.

Here is one of my modifications:

Ingredients:
1 9-inch pie crust (Pillsbury's refrigerated crust)
6 strips of cooked bacon (or three slices of deli ham, chopped)
Half a small onion, sliced and caramelized
5 eggs
1 1/2 cups nonfat milk (Lactaid)
1 tsp salt
1 cup grated Parmesan cheese
1/2 cup partially cooked vegetable (broccoli, mushrooms, and/or asparagus work well)

Instructions:
Pre-bake the crust:
Preheat oven to 350 degrees.
Roll out one pie crust and transfer to a pie dish. Place pie crust in freezer for 15 minutes. Line pie crust with greased foil, shiny side down, and weight with pie weights (or uncooked rice). Bake for 20 minutes. Remove the weights and the foil, bake for 10 more minutes. Remove from oven and set aside.

Quiche:
Whisk together the eggs, salt, and milk. Add 3/4 cup Parmesan cheese.
Caramelize the onions until they are brown.
Par-boil the broccoli and asparagus for 2 minutes, drain and then rinse in cold water.
Cook the bacon until browned. Drain grease. Chop into smaller pieces.

Layer the bacon, onions, and vegetables in the baked pie crust. Pour in egg mixture. Top with the 1/4 cup of Parmesan cheese. Place the pie pan on a cookie sheet and bake until golden brown and center is set, approximately 35 minutes.

Today I gave Alyssa a breathing treatment to keep the bronchial cough under control. Where inhalant steroids don't affect Samantha's behavior, Alyssa turns into an angry toddler. I expect it, but it's still a bit unnerving and sometimes amusing. 

My mom and I took Alyssa to lunch. She was a bit argumentative at first, but soon after she had a hard time concentrating. She was hopping around in her seat, playing with her food in weird ways, and using odd objects as a bell. This is not my kid--she's pretty well behaved but has her moments as any five year old does; this was all steroids. 

My mom and I could not stop laughing. I sat her in my lap and bounced her like a baby to keep her occupied. I couldn't talk to her and expect her to follow along with any instructions. It got to the point where I just cleared everything off the table within her reach rather than tell her "no."

It's sad when the laughing stops and you think about the stuff that you have to give to your child. Both of my kids have had their share. I keep cases of three different breathing meds of inhalers and medicine for one of two nebulizers on hand at all times. We even use a makeup case to carry all the different meds with us. We also have two different forms of prednisone on hand at all times. At some points in their life theses meds have made all the difference.

I am hoping that we can remedy this situation in the future whether it be with surgery or a different approach. Not that I wish my kids would have surgery, but if taking out their adenoids or stomach surgery to tighten an esophagus removes all the steroids and antibiotics from the equation, then it'll be worth it. Their quality of life will improve. And I'll no longer be the mom that restricts my kids activities because of germs and fears of another infection/illness.

We saw Samantha's ENT this week to see how a month on Nasonex helped her adenoids. It stopped the occasional snoring, but she still sleeps with her mouth wide open. Actually, it's a battle to get her to close her mouth when she eats and its probably because she can't breathe.

So the doctor suggested we consider removing the adenoids. Perfect timing. Next week she's scheduled for an endoscopy so we schedule the adenoidectomy at the same time--once under anesthesia.

I'm not looking forward to it, but I'm hoping it helps and she can get off some of her medications. A child should not have so much crap pumped into her body.

She's scared, of course, but should do fine. We have a great group of doctors who will take good care of her.


I think after this is done I'll take Alyssa into the ENT. I bet she's actually worse off than Samantha is with the lingering sinus infections. This year alone, Alyssa has been on antibiotics for about 4 months total and one of those was a 3-month stint. And she's in the middle of another infection. The poor kid is miserable.


I'm nervous, but prepared. When the endocrinologist suggested that we do this in August I nearly had a panic attack. I wasn't mentally prepared. Maybe that sounds silly, but I needed to wrap my mind around the whole thing. I needed to process the pros and cons. I need to be the one who can hold it together when she gets out of surgery and cries. I need to handle this on my own and not run for my own mom. In fact, I need my mom to hold the rest of my family up while I handle with this.

And when the day is done and Samantha is tucked into her bed, I'll break down. And that will be okay so long as I can hold it together and be her rock.