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An Adventure

3/15/2012

2 Comments

 
There was no blood lost during our epic adventure to The Jimmy Fund Clinic yesterday…but there was some blood needed.  Here is a recap:

So, today the Young Family will be traveling off to the Jimmy Fund Clinic in Boston for Zoë's post-chemo weekly check-up. Our clinic day is Wednesday, so every Wednesday from now; until she is done with chemo we will make this trip.

Being home has been AMAZING. I cannot get enough sleep. I nap as much as I can, and with Zoë sleeping through the night I get at least 7 or 8 hours then too. I feel like I am still catching up. The first night home I was jack-knifed across the bed, and no matter what position I was in it was SO comfy.

Zoë is a total rock star. She has been feeling way better since Saturday, and is even coming off of her feel better meds. Her belly is soft, and she is being plumped up with fat formula and plenty of nursing. We took off her bandages the other day, and her scar is barely there! It is amazing the job that Dr. Shamburger did. 

We are working on getting her OK with being on her stomach, or even being held against us facing us. She does not like it. I don't know if it is because she has not really ever done it, or if it hurts... So we are taking it very slow.

I started back to work yesterday working from my home office/art room for four hours. I hope to get in eight tomorrow, and on Friday I will split my day and go into the office for a bit. How strange it is to be working again.
But I have a new project to jump in on, and it is a development project for NOAA. I love that kind of work, so it is nice to return to a fun project.

Well I am off to pack us for our trip to the JFC. 

(Arriving at the Clinic)

We grabbed a quick bite to eat, as did Zoë then we were off for her blood work, and dressing changed for her Broviac.  After a short wait we discovered that Zoë needed a blood transfusion.  This made our “quick” trip to the JFC into a much longer adventure to include time at CHB.

(Arriving at 6 North at CHB)

We settled into a shared room with a little 18 month old boy.  His family was wonderful, and we were able to relax while waiting for Zoë’s blood to arrive…

Picture
 (Just as the transfusion was coming to an end…)

Zoë is raising hell here at CHB. Maybe it is because we are on 6 North, and not 6 East.  Maybe because she
found out we were not staying the night.  She got her blood.  Had her catheter pulled...then needed it readjusted by the urology doctor.  She got night meds and PUKED them all up, and pulled out her NG tube all at once.  Covering both Zep and me in vile med puke. Had her NG tube re-put-back-in, then an X-ray to check its position. Also got the cap or end of her Broviac changed... We are now waiting on the X-ray results and she will get a dressing changed on the NG tube, and more meds before we go. Oh....all of the above happened in an hour too!

Is it bedtime yet? Nope. Zoë is wide awake. I have no idea how her roommate is still asleep!

(Post Second Round of Meds)

The second time I got to give Zoë her meds.  I think the nurse was scared to make her puke them up again.  I
actually withheld the Vitamin D when I found out that it was a crushed up pill rather than the liquid form of the vitamin that she usually gets. I have a feeling that it was the chalky pill that caused her to puke, because after the second round of meds she kept everything down, nursed, then was off in her stroller and heading home without any further puking.

Next time we go to the Jimmy Fund Clinic we will be bringing all of her meds with us…just in case…

We arrived home around Midnight, and all of us crashed out for the night…  *Smiles*

I am not surprised at all that Zoë needed blood.  The chemo is given to her in her blood stream, and the goal of chemo drugs is to destroy cells.  We want them to target Cancer Cells…but until we have drugs that will only destroy cancer in the mean time they will destroy all kinds of cells, to include blood cells. Being that the chemo is racing around her body with her blood it is not a surprise that she is blood low.  What was surprising was that she was not immune compromised!  Her immunity levels are already on the rise, which means that she will be ready for more chemo on time, as long as she continues to do such a great job.

She did get donor blood from some special people.  So THANK YOU special people.  I know that there have been a few people trying to donate to her, and we did not get their names on her list in time.  I am SO sorry about that. 
It is not easy some days to even have the time for a phone call. If you find that you are not on her list when you go to donate please have them call me.

This post is brought to you today by the power of silence, as Zeppo and Zoë are off on an adventure of their own
today to Rhode Island.

Love and Hugs!

P.S. It was so wonderful to see all of our 6 East Nurse Friends!  I hope you all have a wonderful few weeks and we will see you the 28th of the month for more chemo!
2 Comments
BILL (UDC)
3/15/2012 10:40:48 pm

Really happy to hear Zoe is home, Theres no place like home. You and Zep are wonderful parents and I believe God realizes that and will make her healthy and happy. Congrats on having her home and the great mom and dad you are.

Reply
Joy, Ken, Makyla & David Blair (New Orleans)
3/16/2012 01:33:32 am

How wonderful you are home!!!! We are so happy for you. We will keep praying. What an amazing, strong baby, keep in up Zoe.
God Bless you 3.

Reply



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    Laura is Zoë's mommy.  Forever and Always.

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The Zoë Faye Foundation's mission is to provide support and assistance to children diagnosed with Malignant Rhabdoid Tumors, Atypical Teratoid Rhabdoid Tumors, and Non-CNS Extrarenal Rhabdoid Tumors, and their families; provide pathways to information, financial relief, and raise awareness for rare pediatric cancers, and funds for researchers who focus on Rhabdoid Tumors and related cancers with the hopes of achieving a cure.