The L Word

Today's date is January 26th, 2010. For this post I am going WAY back. Back to before D-day (Diagnosis day). All the way back to Halloween. (Disclaimer: this is going to be a VERY long post and there are some not so pretty pictures in it.)

These first pictures were taken the wednesday before Halloween. Jeb was only a week and a half old and not old enough to go out in public yet, and Daddy had class that night, so one of Isabelle's favorite people, Miss Helena, came to pick her up for Bible class. She was very excited, as you can see.

I told her to smile and she decided to show me her belly button instead. :)

Wearing the Halloween skirt that Miss Amber made for her:

Daddy (when he still had hair) holding his little pumpkin: The onsie was Isabelle's when she was a baby.

Trick or treat time: We all four went as a family over in my sisters neighborhood so that Isabelle could be with her cousins. The weather was really nice that night.

Jeb was a pumpkin (costume was worn by his big sister and both his cousins) and Isabelle was a bunny. Her costume is special too because it was made by Ben's mom and worn by both him and his older sister Megan when they were kids.

I wish we had gotten more pictures but we were juggling a newborn and a two year old so it just didn't happen.

We almost didn't go trick or treating since we had a newborn in the house and I'm so glad that we did because little did we know that the following week, our lives were going to drastically change...

The Tuesday after Halloween, Isabelle was not feeling well and running a slight fever, but I gave her some tylenol and that helped. The next day she was feeling worse and her fever got pretty high so we decided to go to the doctor. Actually the only one we could get an appt with was the nurse practitioner. Anyway, they swabbed her throat and tested for strep and sure enough, she had strep. The NP also examined her belly and said that her spleen felt swollen. She called in one of the doctors and she also confirmed that it was her spleen. They said sometimes the spleen will swell when a child is fighting off an infection but they wanted me to bring her back the next day for a finger prick to check her blood levels. I really didn't think much of it, not realizing what a swollen spleen was a symptom of. They were testing for mono and it came back negative in the finger prick but they wanted me to bring her BACK so they could draw a greater amount of blood from her arm. I thought, "Okay these people are being ridiculous now. They just want to run a bunch of tests. It came back negative and mono is not treatable anyway." I seriously considered not taking her to have blood drawn and called the NP to ask her why they were going to put Isabelle through that when there was nothing they could do to treat mono anyway. Without telling me what her suspicions were, she convinced me that it was necessary to get this blood test done. So on Friday, Ben met me on his lunch break at the clinic and took my baby in to get her blood drawn. I had Jeb out in the car and was just going to wait for them to come back. It ended up taking a really long time and they wanted him to wait there until they got the results back, which we thought was weird. I took Jeb over to my mom's house to wait there. Ben called me on his way to my mom's and said, "They want to do a bone marrow biopsy on Monday." I said "What? You're kidding me! This is starting to get ridiculous. What for?" In a very serious tone he said "Leukemia." My heart dropped. I never in a million years would have expected that word to come out of his mouth. I am so glad I was at my mom's house because I immediately started crying. I immediately got on the computer and sent out an email asking for prayers. My sister called a friend of hers who is a nurse who in turned called someone in pediatrics to tell them what was going on. They told us we should not wait until Monday. She said we should take her the ER immediately, because even if she didn't have Leukemia, if her spleen was really swollen to twice it's size, she may need antibiotics through IV to get rid of the infection. This friend of the family who works at the hospital called ahead of time to tell them we were coming and when Ben took her in he didn't even have to wait in the waiting room. They were taken right back. They took some more blood and were waiting for the oncologist to look at it. They saw some suspicious looking cells and decided to admit her to hospital. I left my 3 week old baby with my mom and made my way to the hospital.

Some of her "friends" who stayed at the hospital with her:

On Sunday, November the 8th, our world was turned completely upside-down. We got the definitive results back from the blood test and our 2 year old daughter was diagnosed with Acute Lymphoblastic Leukemia. We were told she would start chemotherapy the next day and would have to go through chemo treatments for the the next TWO AND A HALF YEARS. We were told that she would start losing her hair after about 3 weeks. We couldn't believe what they were telling us.

Before all this happened, my worst fear was that one of my children would get the swine flu. Swine flu I think I could handle, but LEUKEMIA?? Leukemia doesn't happen to me. It doesn't even happen to people I know. It only happens to those kids that you see in the St.Jude commercials, and in the pamphlets you get in the mail. You know the ones you glance at and feel slightly sorry for the kids in them, and sometimes you send a few dollars but other times you just keep the address labels and chunk the rest in the trash? Well guess what? Now MY kid is one of those kids. That child's battle is MY child's battle. I still have days that I wake up and wonder if the bad dream is over yet, but then I meet other children and their families, who aren't as fortunate as we are, whose children have cancer that isn't as treatable as Isabelle's, and I realize that our dream is not as bad as I thought it was.

The picture below was taken on Tuesday, the day we went home the first time. You can see that Isabelle was very excited about going home. She had already been through having an IV put in her arm, a bone marrow biopsy, a spinal tap, a blood transfusion, and a platelet transfusion. When we got home that evening we were all exhausted. Isabelle fell asleep in the living room. When she woke up she had a very high fever and chills and she was crying. We called the oncologist who told us to bring her back. When we got there, she had to have the IV put BACK in her arm and they readmitted us to the same room we had left just hours before. Apparently she had picked up some sort of infection while we were at the hospital, so they put her on what is pretty much the strongest antibiotic known to man and told us we would be staying for at least 48 more hours, and that for the first 24 hours she would have to stay in her room. That night was one of the most difficult and scary nights of my life.

A childhood friend of mine came to see us and brought this Minnie Mouse for Isabelle. Since her immune system was down, we tried to get her to wear a mask by putting one on Minnie. It didn't last very long on Isabelle.

All in all we were in the hospital for over a week. She spent MANY hours in this wagon and in the little car. We definitely got our excercise. It was sort of a "comfort-mobile" for her. She even took some naps in it.

We were released from the hospital on a Saturday, and since my brother-in-law and his brother-in-law were fixing some stuff in our bathroom, we went to stay at Mimi's house for a few nights.
Isabelle was not feeling good at all and didn't have much energy or much of an appetite, but Mimi got her to smile long enough to get a few pictures in her "Big Sister" shirt.

Mimi feeding Jeb:

Getting a bath in Mimi's sink. (Also on the list of places he has had a bath: a turkey roasting pan at my mom's house. Wish I had a picture of that!)

The Tuesday after she was released from the hospital, we had to go back for her surgery. She had a port placed under the skin where she gets all her blood drawn, chemo and blood transfusions given, etc. Going through that surgery was really rough but having the port has been a blessing because it means she doesn't have to get an IV everytime we go in for treatment.

After her surgery, she LITERALLY stayed on the couch for two days. She slept there, ate there and watched TV there. She was very sore and sometimes would not even sit up to eat. It was almost impossible to get a smile out of her.

This is one of the first "happy moments" we had after her surgery. I decided that enough was enough and that she had to get off the couch and do something. I carried her up to the table and gave her some paints and a coloring book. I really treasured that moment.

Jeb's first Sunday to go to church with Daddy: (Izzy and I stayed home)

On Thanksgiving, Isabelle's immune system was still at pretty much it's lowest point, so the doctors advised that we have a quiet Thanksgiving at home. My mom brought over some food that ladies from my brother's church had made, and Ben's sister stayed with us for a few nights. I made somewhat of an effort to decorate the table and have a normal Thanksgiving.

My little turkey: this was big sister's shirt when she was a baby.

For the first month of treatment, Isabelle was on some intense steroids. They affected her in many ways: One good way is that they help to kill the cancer cells, but they also made her belly and cheeks swell, and they made her extremely moody and HUNGRY. I thought she would eat us out of house and home! She craved a lot of meat and a lot of salty things. She was much worse than a pregnant woman. She would wake up sometimes at 3 or 4 in the morning SCREAMING for a hotdog or a cheeseburger.

Swollen belly from the steroids:

That first month of her being on steroids, going through chemo (not to mention having a newborn to take care of!) was the longest and most exhausting month of my life, both physically and mentally. The picture below I captured at one of her worst moments and I would say it pretty well represents what that month was like. We didn't get a lot of smiles or giggles out of her.

When she came off the steroids, things started to get a little better, but it still took some time for her appetite and swelling to go down.

She was given this "chemo duck" when we were at the hospital the first week. It has a "port" just like her where she can pretend to give him medicine. It was supposed to help deal with and prepare for treatment. In the beginning, she did not want much to do with it because I think she knew what it represented. After that first month, though, she finally started to show some interest in playing with him and I caught a picture of her listening to his heartbeat.

Cousin Sienna feeding Jeb:

Fruit smiley face made by Daddy:

A friend of the family brought this Dora tray over for her. She loves it and we used it a lot in that first month, and still do sometimes.

Giving little brother a bottle:

The week after she came off the steroids, the children's clinic had their annual Christmas party. Isabelle had not been able to get out and do very much fun stuff, and we thought this would be a good opportunity for her to see the doctors and nurses in a different setting.

All bundled up and ready to go:

Enjoying some Christmas cookies:

She was too afraid to sit on Santa's lap, so this is the best shot we got with him: (Still better than last year's shot though!)

Jeb with Santa:

and with Mrs. Clause:

She got these straws as a prize for playing a game. She called them drumsticks.

Ms. Jill, the child life specialist, painted a butterfly on her face.

Family shot:

We had a great time at that Christmas party. We were very happy to be out and about as a family. Things were still not completely back to normal at that point, and I guess they never will be, but it was a great night.

Now I want to share something that I wrote down during that first month:

When we were staying in the hospital (for the second time in one week) right after Isabelle’s diagnosis, one day I left to go pick up a few things and just take a little breather. I rode the elevator downstairs and as I was walking through the lobby, the lady at the front desk said to me, “Have a great weekend!” I just gave her a half-smile and politely said “thank-you”, but in my heart I was screaming at her, “HAVE A GREAT WEEKEND?? How can I have a great weekend when my precious baby girl is on the eleventh floor struggling for her life?? How can I have a great weekend when she is up there suffering and having who knows what kind of drugs pumped into her body? How can I have a great weekend knowing that my child who I love more than life itself has cancer cells attacking her blood as we speak, and is going to have chemotherapy for the next two and a half years of her LIFE??” I walked through the breezeway to the parking garage and found our car. I drove through downtown on my way home and saw many people going through the hustle and bustle of their daily lives, cars driving up and down the interstate as if everything was normal. I wanted to stand in the middle of traffic and scream, “How can you people act like everything is so NORMAL??? My child has CANCER! My beautiful little red-headed girl has CANCER!!” But I didn’t. I just kept on driving, and the world around me kept on spinning, oblivious to what was happening in MY world. I went through the McDonald’s drive-thru to get my baby some “chicky nuggets” (her request). After the cashier took my money, she politely said “Have a nice day.” “Right,” I thought. “That’s easy for you to say.”

I am not angry or judging those people for telling me to have a nice day, or a nice weekend. They were just doing their jobs, but I can tell you this: from now on, when I tell someone to have a nice day, I am going to say it with a lot more sincerity than I used to, because I don’t know what kind of burden that person is bearing right now. I don’t know what kind of demons they are fighting off or what kind of pain they might be going through. I am going to look at people a lot differently from now on. ~

Isabelle went into remission at the end of her induction phase, and we are so thankful for that. We are still adjusting, but we have found a routine and a new normal. We have been taking her to Bible class and she is back to her spunky, normal happy self now. In the next post I'll post some pictures from our Christmas. Love to all.