Our First Year with Leukemia

We all have days in our lives that re-route our paths. These days stand out more than others, and we remember the minute details. Sept 23, 2010 was one of those crazy, disorienting days for me. I remember the feelings and the looks from the doctors. I remember exactly how it sounded to hear "the labs do indicate leukemia", "we are very concerned", "we need to make sure there are no tumors", and "he is in critical need of a blood transfusion". We had no idea what the tests were going to show and, for that day, we really thought we might lose our baby boy. It wasn't long, though, before the tests came back and we were told that he has a very curable form of cancer. It was a relief that I can't explain. At that point, it didn't matter how long or hard the treatments would be. The point was that there WAS a treatment and that he would almost certainly be healed, eventually.

The fall continued to be a whirlwind. He was in pain almost constantly for about 6 weeks. Four of those weeks were spent in the hospital (5 days in the PICU). We celebrated his 5th birthday in the hospital. He had many problems with his stomach and would scream in pain over and over... it was an ear-piercing scream. One night, just when I thought I couldn't listen to him scream or see him cry anymore, it stopped after he said "only God can help me now", and we had one night without pain. Through this, we got the great news that he was in remission (as was the goal in that time-period).

Slowly, many of the pains subsided, he lost his steroid weight, and began to return to normal. We got used to our new routines of weekly doctor visits, nightly meds and Hickman dressing changings, and regular chemo. He had several-week blocks of feeling good and almost totally normal. Some days and weeks are harder than others, but, overall he's doing well. Most importantly, the cancer has responded to the treatments and has been kept away. Also, his blood counts usually stay up high enough that he doesn't get dangerously ill.

We are not the same family we were a year ago. We aren't done with all the trials yet, and things still get difficult and stressful, but we're surviving. There is no way to explain how much everyone's support has helped us. I feel guilty sometimes because I didn't do a good job of thanking many of the people for what they have done, especially early on and when Jon lost his job.

Through it all, God as been with us. I could almost physically feel Him holding me up during those first few days. This is all part of our journey and is contributing to who He intends for us to be, especially Joey.

Thank you all for the moral and financial support, for the prayers, for the love, and for the practical help we've been given.

Here is a summary of Joey's "stats" for his first year of treatment:
4 hospital admissions
3 ER visits
70 Visits to Dr Rosen (roughly)
3 Surgeries (Hickman)
2 bone marrow aspirations
10 spinal taps
6 blood transfusions
1 platelet transfusion
7 chest x-rays
2 CT scans
70 CBC's
1 MRI
3 EKG's
2 Electrocardiograms
56 days of steroids
32 rounds of chemo drugs (different types, including 364 MTX pills)
3 sinus infections
2 Hickman infections
5 Rounds of antibiotics

Surgery #3

The surgery to remove his central line was quick and simple. After we got home, I took the opportunity to snuggle with him and just hang out for the rest of the day.  He and I really needed it.

He wasn't feeling super great today, but he still managed to have some fun.  I'm hoping he is even better tomorrow and is ready to go to school on Monday.  Monday night, we go in for a finger poke to get his weekly CBC to make sure his counts are high enough for chemo on Tuesday.  It will be interesting to see how he does with it.  It may help us make the decision on whether or not to put in a new central line.

 In the ER late Monday night

After his spinal on Tuesday

 

Central Line (Hickman)

 Surgery Prep - Decorated his mask

 He stared to get nervous, so he played a game to distract him

 Going home after it was done - he was pretty groggy

Rough Week for Joey

On Sunday, Joey fell asleep during church and woke up with a low fever.  He slept more in the afternoon and woke up with 101.6, so Dr Rosen told me to take him in to get checked out. We spent the evening in the ER having the normal checks done.  Nothing showed up that night and his counts were high enough, so they sent us home.

I kept him home from school on Monday to get some rest. On Monday night, at 11pm, the ER called us and told us to bring him back there right away.  They informed me that some bacteria had grown in the blood culture they took through his line.  They checked him to make sure he was doing ok and gave him the first dose of high-powered antibiotic through his line.

Tuesday morning, he didn't go to school and he slept until 11:30. That afternoon, he had his treatments that had already been scheduled.  He had a spinal, Vincristine (strong chemo) and started on his steroids for the week. They also gave him another dose of antibiotic. I had to try not to think about everything going on at the same time - it's a lot for his little body to handle.

Wednesday he had a good day at school and got another check-up and antibiotic dose. He had his first major steroid meltdown that evening...he cried and cried.

Today (Thursday), he went to school, but then fell asleep. When he woke up, he was crying for me and saying he didn't feel well, so I came and picked him up. Later, we went in for another antibiotic dose and found out that he needs to have his line removed.  The bacteria there now is the same kind that was there last month, so they think it's the same incidence.

Tomorrow morning (at 7am) we'll check in to the hospital for the surgery.  It should be quick, but he'll be put under, so that always makes it more of a big deal.

We had a several months there with few problems and we sort of got used to that. This week has been a bit of a reality check.

Jon Gets Arrested

Wednesday, Sept 7, Jon got pulled over for speeding.  When the officer scanned his license, it came back that there was a warrant for Jon's arrest in Great Bend, KS.  Jon knew right away what had happened.

Three years ago, Jon's work truck and wallet (along with other items) were stolen. They used his license (which did not include his SSN), to print fake checks in Jon's name and buy items with them around town.  The police there knew about it and let us know they were working the case.  Well, somehow they made a mistake on one of the fraud counts and didn't clear Jon's name.

Of course, the office who pulled him over didn't know about any of this, so he handcuffed him, put him in the back of his car, and put him in the holding area.  He called his boss who came and bailed him out.

There is a court date on Sept 19 in Great Bend...

Labor Day Weekend

The whole family spent Labor Day weekend at the lake.  We have one really good day on the lake, one day shopping, and one day just hanging out. 

Joey can't get in the water, but we let him dip his feet

We hadn't been letting Joey ride on the tube this year because he can't get lake water in his central line. We decided to cover the line REALLY well and let him do it.  He loved it.

That's Joey under the towel.  The boat usually puts him to sleep.

Katherine had fun, as usual.  Her favorite seat is right up front.

Katherine and the little skier.

Even Asante enjoyed the water.

Yellow Belt

Katherine had her first Tae Kwon Do belt testing this month and earned her yellow belt.  She got pretty nervous when she realized she had to do it in front of a room full of people, but she did really well.

You have to watch for her in the middle of the screen.  I was trying to video her in between some big guys.

Joey Photo Shoot

I got to do a little photo shoot with Joey to try to get a new one for over my stairs.  He did a good job and I think I got some good ones.  He's growing up and he looks so good.  You would never know by looking at him that he gets chemo every-other week.