Tuesday, June 22, 2010

Chemo's kicked in






The title pretty much says it all. The chemo has taken over Daylon's body and it's a depressing thing to watch. As big of a pain the Busulfan was (having to do some many frequent dressing changes) the Cytoxin is sooo much worse. He's so weak that his cry isn't even a real cry. Not to mention all the vomiting has blistered his insides making his voice hoarse once again. He's on three different nausea medications and they have seemed to help. Yesterday he started on TPN (IV nutrition) because he was down to 6 oz. a day. A far cry from his normal 40-50 oz. It's also helping with the vomiting. Nothing in, nothing out...sort of. I don't mean to sound negative, we know that this is, unfortunately,one of the hard things he has to do to get better. It's just that it's been an emotional few days. It's so hard to watch Daylon suffer his whole life and now he's suffering more. I pray this transplant works. On top of feeling rotten from the chemo and his 1 year old molars coming in, he has to deal with the pain of bandage changes all day. Yes, it was just the Busulfan that required frequent changes, but when he vomits, they get dirty and need to be changed. Thankfully, I can get away with only doing the spots that are wet. He's not gagging and doesn't know how to commuticate that he's going to get sick, so I've yet to be successful with draining through his G-tube.

One other difficult thing about the Cytoxin, is that it can cause kidney, bladder issues. To keep it under control they run a constant flush and require that his diaper be changed and weighed by a nurse every 2 hours, 24/7. He's not the best sleeper these days so I end up waking him up most of the time. Sleep is a thing of the past. The crummy thing is if his diaper doesn't weigh enough than they give him medication to make him go within a half an hour. Yep, another change. Another half hour to get him back to sleep. It stinks too that we have to be super careful about handling him (in a non-EB way) since his body is expelling the chemo through his skin and urine. Everything gets thrown away (cloth diapers and onesies, I mean). Everything is wiped down with super strong, odorful cleaner and we have to be double gloved to change him.
On a happier note, Daylon's organs are all still function properly! This is a big, big deal. His organs stand a higher risk of deveoping life threatening issues than the other EB kids, since his form EB is internal as well as external, so the chemo is super risky. The doctor just came in and said that they're all really excited to that Daylon went all the way to Day -3 before he needed the TPN and they're floored that he hasn't run a fever the whole time! Infection is really common when you don't have an immune system and Daylon's sores allow for plenty of bacteria to grow. The final great thing is that today is his last day of chemo!!!! The effects of the chemo will still be around for a few more days, but at least he's done with that stage! Tomorrow is a rest day for his body and Thursday is the transplant! It's all happening so fast now. Once you start moving, it really goes.

Father's Day was, of course, on Sunday and the kids came down for their weekly visit. The nurses let us all be in the same room (3 person limit due to the room filters) for a few minutes to watch Brian open gifts and take pictures. Since Daylon started getting really sick on Saturday, I stayed up at the hospital and Brian was back at the RMH with the kids. Keira woke him up (all on her own!) at 6:12am and brought him to the table where she had made him a breakfast of Nilla Wafers, chocolate chip granola bar, blueberry yogurt, some rasins and a chocolate pudding cup. She's not allowed to use the stove, so she worked with what she had! I'm so proud of her. Brian said it was the best Father's day breakfast he ever had. When they got to the hospital and walked into Daylon's room, he pointed and said, "Da-da". Brian was face was beaming. It was so stinkin' cute!
Ya know, there wasn't a fancy breakfast, a bunch of presents and a day filled with all Brian's favorites, but as I'm coming to realize more and more, you don't need all those things to make someone feel appreciated. Brian seemed happier in the 20 mins. we all spent together in a hospital room, than he did in the full day celebrations of the past. It seems simple enough, and I always thought that was the case, but now I know it. It's really been such a blessing in our lives to raise a sick child. We've become mindful of many parts of everyday life that were always moments and decisions we took for granted . Each day you have together is a gift. Cherish it.

16 comments:

HeatherD said...

Absolutely beautiful. Daylon is strong, no doubt, but your whole family is strong too. Many prayers and blessings to you all, and looking forward to Thursday!

Aviles Family said...

I love Keira's breakfast! That is so sweet of her to be so thoughtful! You guys are truly an inspiration to the rest of us to remember to enjoy the small moments. I am so glad today is the last day of chemo for Daylon. Thursday isn't very far away! Keep us posted and I think about you and your family ALL the time.

Mom to Many said...

Your in my prayers.
Poor baby! Boy he is facing his Goliath.
Glad this phase is almost over.
I can't imagine having to buy SO much gauze and so many cloth diapers and onesies.
Keep going Mom and Dad. You are doing a great thing for this little boy.

Cheryl

Amy F. P. said...

I'm so glad things are going well for Daylon. Your family is so sweet. You're in our prayers.

jeanine said...

Oh this post made me cry. You guys are so wonderful! I love that Keira made breakfast for Brian! That is too sweet! We're still praying...

Kathryn said...

You don't know me. I linked to your blog through Jonah's blog (Before the Morning)...I don't know Jonah either. I found him through another blog...but Patrice (Jonah's momma) asked for prayers for you and your family. And I wanted to tell you that I AM praying. You are not in this alone...not by a long shot. I have saved your blog to my favorties and will continue to raise you up in prayer.
Kathryn
Kansas City, MO

Amber said...

Jen, my mom went through severe chemo for 9 months, and I watched her completely change. It is very difficult to watch that happen to an adult, I'm sure watching it happen to your baby is terrible. You are in our prayers. So glad to hear that the chemo will be done soon, and that his internal organs are in good shape!

Patrice said...

Still praying and thinking of you guys ALL. THE. TIME. Thank you for the updates and I know it's got to be so hard going through all these tough things before you finally start to see the light at the end (or beginning, shall we say!). Let me know if there is anything I can do from afar. Hugs.

Sara said...

I am visiting from Bella's blog.
I admire your strength and the love your family has for one another. It's clear that Daylon is surrounded by love.
I am praying for all of you...

Nancy said...

Wow! This one made me cry too. I'm so excited for Thursday.

Jenny T said...

So true, it is a blessing to raise a sick child, it's an eye opener! We now appreciate what we have even more and nothing else is important when you're not helathy. No money in the world can buy happiness when your child i sick. Take care, I keep you in my thougts! Best regards Jenny in Gothenburg, Sweden

Linda said...

Hi Jen:
So sorry that Daylon is feeling so yucky. Things hopefully will be getting better over the next few days. Keeping your family in my prayers all the time.
Please kick some EB butt for all of us. Take care. Love Leah's Nana

Kristyn said...

I'm so sorry Daylon is sick :( ...but what a awesome fathers day for Brian!! OMG! what a great family you have there. BEST wishes always . WE love you guys dearly.

BRIAN AND BROOKE said...

YOU ARE SO RIGHT IT CAN BE EASY TO TAKE FOR GRANTED EVERYDAY THINGS! YOU AND OUR FAMILY ARE AN INSPIRATION TO US ALL!! SO PROUD OF YOU DAYLON YOUR DOING A GREAT JOB!! SUCH A STRONG AND BRAVE BOY! FEEL BETTER SWEET DAYLON!! YOU ARE ALWAYS IN MY THOUGHTS AND IN MY PRAYERS!!

sharon kaye said...

We love you!!!!! Thank you for the updates. I had tears in my eyes reading your post. Then I read the comments and realized I wasn't the only one crying. You and your family are an inspiration to all of us.

Joseph and Tiffany said...

Still, still, still praying for your family and Daylon. Even my kids (ages 4 and 2) are praying for him in their nightly prayers!! I'm so glad to hear that he hasn't had any fevers/infections thus far. Obviously it's still really hard to go through all the stuff that will eventually make him better though. You are so insightful and wise. (Tiffany Jones Hancock)