It is 5:30am. I shouldn't be up yet, but I couldn't back to sleep after Jeb waking up a while ago, so I thought I would come here and vent a little, give you an update and post a few recent pictures. I'll do the pictures first:

My happy baby boy: I think this one was taken a little over a month ago. Isn't he handsome? He really is the HAPPIEST baby I've ever seen. He lights up every time he sees me. He loves his Mommy. It makes my day every time.

He is also eating babyfood now! So far, I haven't come across anything that he doesn't like. The boy likes to eat! In case you couldn't tell!

We had a break from treatment for a couple of weeks and Izzy and I got to go to storytime at the library for those two weeks. She really enjoyed it, although it was something new so she was a little clingy to her Mommy at first. Here are a couple pictures of her playing in the kids section after storytime.

There is nothing in the world like watching your two babies loving on each other. I love to watch Isabelle make her brother laugh and smile. Even at such a young age, he knows that this little person is going to be important in his life.

We had long break from doing daily oral medication with Isabelle for awhile, and I don't think we fully appreciated it. The only thing she had to take for quite awhile was a preventative antibiotic on the weekends, and that one doesn't taste too bad, so she had gotten GREAT at doing medicine all by herself, with no parental intervention! Unfortunately though, we had to start back on the steroids recently, and those don't taste too good. She had to take them for 7 days, she has been off for almost 7 days, then she will start them again on Friday for another 7 days. We try really hard to give her plenty of time to do it on her own, and she knows that she will get a popsicle, a lollipop, or some other treat if she takes her medicine. We even mix it with chocolate syrup. We still usually end up having to intervene, which is really painful for all of us, but what do you do? She HAS to take it. Anyway, one night we had been begging and pleading with her for about an hour to take it and she finally did in our bedroom, and she wanted to eat her popsicle in there afterwards, so I brought it to her with a towel to catch the drippage. She was so exhausted that she fell asleep holding her popsicle and we had to get a picture.

Some more recent pictures of Jeb: He holds his head up great when he's on his belly and is rolling over some now too. How did he get to be so big already??

Now onto the updating and venting:

Isabelle is in the "Delayed Intensification" phase of treatment right now, and it is pretty much how it sounds: intense. It is the last phase before she starts maintenance, where she'll only go once a month, so they are trying to hit any remaining leukemia cells that might be hiding out in her body. She had to go to the clinic twice last week. On Tuesday for shots in her leg and Thursday for chemo in her port. The week before that she had a spinal tap and chemo in her port. Today she goes back for another round of chemo in her port. Like I said: intense. She has been getting really sick after treatments lately, so they gave her a prescription for anti-nausea, which does help. Some days, even if she's not getting sick, you can just tell that SOMETHING is bothering her. She doesn't feel good, she is moody, whiny, and cries A LOT. It's hard to know what to do as a parent. Sometimes I don't know whether she is really hurting, or if she's just throwing a fit because she is two. She doesn't know how to verbalize her feelings. I'm having a hard time finding a balance. I don't want to be too hard on her because I know she's going through more than any two year old should have to, but at the same time, I don't want to be too lenient on her because she will come out of this expecting the whole world to cater to her. What to do? Being responsible for shaping a little soul is hard enough! I worry about her a lot. Not just about her physical health, but about how all this is going to affect her mentally, emotionally, and socially as she gets older. I guess we just have to do our best and leave the rest to God, but that's easier said than done sometimes. Somedays I just feel like I can't find my center of gravity. I need to be strong for my children, but sometimes I'm just WEARY, and that's all there is to it. I have been taking comfort in this scripture lately: "Come to Me, all you who labor and are heavy laden, and I will give you rest. Take my yoke upon you and learn from Me, for I am gentle and lowly in heart, and you will find rest for your souls. For My yoke is easy and My burden is light." (Matthew 11:28-30) I do need lots of prayers though. I need prayers that God will help me to handle everything I say and do with Isabelle the utmost grace and wisdom. I need prayers that God will give me the strength to get through each day and not lose my patience. I need prayers that I can find my peaceful place when the storms around me are raging. I need prayers for humility to ask for help when I need it. I'm not very good at that. I don't want to be a burden on others. I need prayers that I will be joyful for my children's sake. It's not good for them to see me being down. I have read this scripture many times: "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." I want to be mature and complete, but the process sure is painful!

On Valentine's Day weekend, Ben and I got to have a nice little getaway. Living Water Christian Church was having a "Marriage Matters Weekend Celebration" Friday night and Saturday. Jeb went to spend the night with Mimi and Nanee came over to spend the night with Isabelle. Ben and I went to the Marriage conference and then got to spend the night at a local B&B all by ourselves! It was wonderful and much needed!! We had a great time at the marriage conference.

My brother Don and sister in law Suzanne (who is pregnant, BTW!) playing the marriage game.

At the end of the conference they had planned a "vow renewal" ceremony and "wedding reception". Somone made this beautiful cake and we all lined up and cut our pieces of cake together like you would at a real wedding reception. It was really neat.
Not sure whose hands those are. I took these pictures from Living Water's facebook page.
My baldy and I after the vow renewals.
The preacher from Living Water had some tickets to the VT vs. UVA basketball game that he wasn't going to be able to use, so he had us all put our names in a hat on Saturday to win them, and Ben and I won! It just happened to work out b/c we were already going to c'burg to pick up Jeb, so we dropped Izzy off at Mimi's and went to the game.
It was "blackout" night, so we stopped by Wally world and got a couple of black tshirts.

It was a great weekend, but we were so tired that we decided to leave the game at halftime. The older couple sitting beside us said "You're leaving so early? It was just starting to get exciting!"

The best Christmas I've ever had

So I am finally getting around to posting the pictures from our Christmas. I am a horrible blogger! So much has happened in the last two months, but hopefully I will eventually catch up! PS-This is going to be another LOOOONG post!

This first part is difficult for me to re-live, but I want to document as much as I can so that we can all look back someday and see what we overcame. Just before Christmas, Isabelle's hair had really started coming out fast. There were huge bald patches all over her head, and it was really bothering her when it came out. (getting in her face, mouth, etc.) A couple people at the star clinic had told us that when it starts coming out fast, it's better to just go ahead and shave it off. Because she is so young, we had made the decision that we weren't going to do that. We would just let it run it's course. However, we didn't anticipate it bothering Isabelle so much as it came out. We talked to another family whose little girl had gone through a different type of leukemia. To help her deal with her hair loss, they decided to give hers to the birds outside to make a nest. Well, in VA on Christmas there was like 18 inches of snow on the ground and not a whole lot of birds outside, so we decided to take it to my nieces' guinea pig instead. Isabelle was VERY excited about giving her hair to "guinea guy". It turned something that could have been very traumatizing into something fun and exciting. Everytime a piece came out, she would RUN up to me and say, "I have some more hair for guinea guy!" We saved it all and put it in a ziploc bag as it came out. We decided that Christmas eve would be a good day to go ahead and take it all to him because it could be his "Christmas present". That was a very difficult day for me, and I had many doubts about whether we were doing the right thing by shaving the remaining hair off. I hope that when Isabelle grows up she will know that we ALWAYS did what we thought was going to be best for her.

Guinea Guy's "Christmas present" all wrapped up with a bow on it:

Guinea Guy wasn't too sure what to think about it. I think he thought it was another creature taking up residence in his cage.

After that we went to Mimi's house for Christmas eve lunch at her house. I think it was good that we had something to do that day.

My sweet baby boy: (Yes, he's laying on his sisters old blanket.)

Part of the spread at Mimi's house:

Being silly:

Loving on the giant Nemo she got from Uncle Josh and Aunt Amy.

Aunt Amy opening presents:
Okay, I have to tell you the story behind this next one. When Ben and his brother Josh were kids, Ben had this lego castle that he had spent hours building. Well one day when he was at school, Josh leveled it, and as you can imagine, it caused some conflict in their brotherly relationship. Well check out what Josh got Ben for Christmas this year:

The beginning of a new era:

Meggie with her new Nikes:

That afternoon, we went to Pawpaw and Grandma's house for dinner.

I love, love, love these headbands and bows. My friend Amber and her sister in law made them for Isabelle. I think it's another one of those things that made her hair coming out exciting for her. When I put her front of the mirror that day, she said, "I look like a princess!" I think she is the most beautiful princess I've ever seen.

Checking out the Christmas tree:

That evening, my sister was having a little get together at her house like she does every Christmas eve. On our way back from Pulaski, we decided to stop and say hi to everyone. Looking back on it now, I know that it was just a little too much for one day for ALL of us. I LOVE my family, but I remeber sitting there in the room full of people and feeling like I wasn't really there. Like I was having a dream or something. It's hard to explain, but it had just been an emotionally exhausting day. Isabelle and Ben were also very exhausted and she sat in his lap and didn't say much for the first few minutes. I am glad we went though because she eventually had a great time playing with her cousins.

We finally got home and were so happy to go to bed and have Christmas the next morning. We noticed that Isabelle felt a little warm so we monitored her temp and before we put her to bed her fever went up above 101.5. We called the oncologist and were told to bring her into the ER to get antibiotics in her port and that if she was neutropenic she would be admitted to the hospital. My mom met us there and then brought Jeb back to our house.

That was a rough night because we had had such a BIG day that day. We prayed and prayed and prayed some more that we would not have to spend Christmas in the hospital. God answered our prayers and she was not neutropenic! We got home around 3am on Christmas morning. Just in time for Santa.

My mom had stayed the night with us to help out with Jeb, and someone from church had dropped off something good for breakfast that we could just stick in the oven. Mom stayed and had breakfast with us and watched Isabelle open some of her presents, then took Jeb back to her house for a little while so we could take a nap. (Thank you Mama!) We had a really nice quiet Christmas at home.





Giant Tigger from Aunt April and Uncle Chris and the giant Nemo she got from Uncle Josh and Aunt Amy:

Our Christmas Tree: Some of the ladies from my brother's church had come over shortly after Thanksgiving to set it up for us, for which I was sooo grateful. (Thank you Katie, Jamie, and Deanna!)

Seeing her stocking and "Santa" present that morning. She got a dress up tower with a mirror on it to play dress up.

Some barbies that she got from her friends at the star clinic:

As difficult as having a child with cancer is, there have been many blessings that have come from it. We have been so overwhelmed by the kindness of others, even strangers. Someone who doesn't even know us found out about Isabelle's diagnosis and that she wanted Santa to bring her a slide and some swings for Christmas. This very generous man had someone go out and buy her a swingset AND a playhouse. He also had someone come to our house on Christmas eve, shovel away the snow and set it up for her. Although it was raining on Christmas day and we didn't get to go outside, she was overjoyed to see that Santa had brought just what she wanted.

Isabelle enjoyed "helping" Daddy put his castle together on Christmas day.

I think it was good therapy for both of them.

Happy baby boy:

He didn't seem too happy with the present his sister picked out for him though:

Nannee and Jeb:

Opening more presents:

I think one of her favorite things was the tag jr reader that she got.

More lego therapy:

The finished product:

The evening of Christmas day the doctors had told us to come back into the ER for Isabelle to get a follow-up round of antibiotics. They actually had left her port accessed when we left the night before, because the more times they have to access it, the higher the risk of infection. We came prepared this time since we knew we were going ahead of time. So we came with a bag of toys, coloring books, etc, and her own blanket and an overnight bag in case something came back on her blood culture and they were to admit her to the hospital.

We had the same nurse both nights and he was wonderful. Since it was Christmas day he was wearing this awesome hat.

He let Isabelle try it on for a picture.

"There ain't no heartbeat!"

Beautiful.

That second night in the ER we ended up being in the room right next door to the room we were in when we took her in the weekend she was diagnosed. It brought back a lot of memories and it was amazing to see how far we had come in less than two months. We got home around 11:30 that night. We took one of the back roads on the way home, and as Ben was driving, all of the sudden he stopped and said "look at that". There were 3 or 4 deer standing in the snow. He opened Isabelle's door so she could see them, and they all pranced away through the snow. It was one of the most beautiful things I have seen. It felt like a gift. Like God put those deer there in the snow just for us. It was the perfect ending to the best Christmas I've EVER had.




"Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change." (James 1:17)