Sunday, October 28, 2012

10/26/12... Day 1 of Consolidation Phase

BJ's counts were up on Friday, so he was able to begin the next phase of treatment, called "Consolidation". He had a spinal tap with chemo, and more chemo through his port. 

He did well with the anesthesia and the procedure, and after waiting in the recovery room for a couple of hours, he was finally admitted. The hospital was busting at the seams Friday. When we went down for BJ's LP ("lumbar puncture"), we were told there were 8 kids there that day for LPs. The 11th floor was full again, so we had to wait for someone to be discharged, and their room cleaned before we could be taken upstairs. It makes for a very long, exhausting day.

Even though he was given medicine to counteract the nausea, the new chemo drug that caused the overnight stay immediately made BJ nauseated. He's still feeling nauseated today, and very tired. This new phase is going to be more tough than the last one. 

Tuesday, October 23, 2012

10/23/12 update

BJ is feeling better and even went outside for a while this weekend. 

On Sunday, he helped carve a huge pumpkin. He enjoyed cleaning the insides out and gathering up the seeds. 

Saturday, October 20, 2012

Good news and not-so-good news

First, the good news... BJ is in "remission". Remission really just means that there are less than 5% of the leukemia blast cells inside his bone marrow. Typically, it's good news to hear, but surely doesn't mean he is out of the woods. 

The not-so-good news... BJ's MRD is 0.09%, which is higher than we were hoping it would be. This number puts BJ into a very high risk category, and his treatment will be tougher to get him to complete remission in the 3 years of treatments. 

10/20/12 update

We went to the clinic yesterday and they accessed BJ's port to draw blood and start him on IV fluids. We had to wait for the lab work to come back, because now, his treatment is dependent on his counts. 

His counts came back and they were too low to begin treatment. So, we will try again next week. 

BJ was happy that he got a little break from the chemo, but he also would like to get all this behind him. He is in pretty good spirits, but his back is constantly hurting. 

Thank you for your continued support and encouragement.

Monday, October 15, 2012

10/15/2012 update

BJ has been really tired the past few days. 

He barely came out of his room. 

His back is still very sore from the bone marrow aspiration, and it makes it hard for him to get comfortable. It's eased up a little today, but is still sore.

Friday, October 12, 2012

Day 29... Last day of phase 1 treatment

BJ was very nervous about today, but it came and he did really well. 

He had a spinal tap with chemo and a bone marrow aspiration. He did well with the anesthesia. 

From today's results that we will get back later next week, we will know if he's in remission and what his MRD (minimum residual disease) number is... We're hoping for less than 0.01. 

The next phase starts next Friday with another spinal tap with chemo and an overnight stay in the hospital. 

Please keep BJ in your prayers... 

Monday, October 8, 2012

Day 25 of 29 days of Induction

BJ was very tired all weekend. He finally felt like getting up and taking a shower yesterday afternoon. 

He wanted a hair cut, so we went outside and I cut his hair. It's really starting to fall out now. He doesn't seem too concerned, but I know it will bother him when it's gone. 

Right now, he is bothered most by how puffy his cheeks are. That's due to the prednisone, and will hopefully go back to normal after he gets to remove that medication from the handful of pills he has to take every day.

Hanging on to Hair

BJ's hair is really starting to fall out now. He wanted a hair cut yesterday, so we went out on the deck, and I gave him a hair cut. I know hair shouldn't be all that important, but it is. It deeply pains me to think about him losing all his hair. I know he'll still be the same BJ that he has always been, but it's an obvious and outward sign of what he's going through. Sometimes when he feels good, you can almost forget for a while that he's sick. It's the look of "normal" that I'm hanging onto. I know what's going on with my son, we've been living with it for 25 days now, but somehow, it's still a bad dream. When all his hair is gone, there will be no escaping this reality. Not that there's a real escape - it's just that right now, he looks just like any other kid - just a little pale, and tired, but normal for the most part. It breaks my heart that the last piece of "normal" will be gone soon. While we were in the hospital because of his fever last week, one of the doctors commented that BJ looked better than he did. It had some truth to it, because BJ still looks normal, except for his puffy cheeks.

I know that his hair will be gone, and we will go to sleep and wake up to face another day. I know that his hair will grow back eventually. I know that the people who matter will not look at him any differently. I know that he's super strong, and we will get through this, battling one day at a time.

Looking super cute after a hair cut

Saturday, October 6, 2012

Day 23....

BJ got to come home this afternoon!! We were so excited! He did a wheelie in the wheelchair on the way out of the hospital. No offense to the awesome nursing staff at Levine's but we were so ready to bust that joint! 

Hopefully the rest of this induction phase is uneventful. His next scheduled appointment is this Friday for another lumbar puncture and chemo. 

Thank you for your continued prayers! It works! 

Friday, October 5, 2012

Day 22 of 29 days of Induction

We've been at the hospital all day, and going to stay another night. 

It's not the news we wanted to hear, but they wanted to keep BJ because his ANC had went down from yesterday. He hasn't had any more fevers since yesterday morning; and after 24 hours, the culture shows no infection. They'll keep checking that for 48 more hours to look for any infection. He looks good and is still eating well. He's still getting antibiotics in his IV every 8 hours, and they gave him his scheduled chemo treatment this morning. 

He's in pretty good spirits, but just feels tired. 

So, we'll just hang here and wait, and hopefully tomorrow BJ's blood work will come back with some improvement. 

Day 21.....

Thursday was day 21, and we are back in the hospital again. Hopefully it's a short stay this time. We're here because BJ developed a fever. Fevers are concerning because it could mean that he has an infection brewing. He's on such a high dose of prednisone, which is an anti-inflammatory drug, and because a fever is the body's response to inflammation, it doesn't take a high fever to put you back in the hospital. So we got here yesterday morning and finally got admitted late yesterday afternoon. They drew blood for labs and gave him an antibiotic through his IV port. He got another dose last night. We should know later this afternoon if the culture showed signs of infection. BJ was very upset at having to come back here to stay. We talked a little about doing what we have to do, and why a low fever can be a really bad sign. He finally accepted it and reluctantly got in the car. We picked up Carly from school to take her with us. BJ wants her to feel included and he liked it that she was there to hang out with us and wait for a hospital room. The 11th floor here is for kids with cancer. Yesterday, the floor was full, so we had to wait for someone to be discharged and their room to be cleaned. It's a sad thought at how many kids are going through this brutal process. We are praying for them as well.

Wednesday, October 3, 2012

Day 20 of 29 Days of Induction

It's Wednesday, day 20 of the first phase of treatment that lasts for 29 days. The next phases of treatment are actually harder that this first phase. The next one is 4 weeks of chemo given in the spinal fluid, plus another type that will be given by shot at home (because we are able to do this at home), and medication given by mouth. This one will repeat for 4 weeks after the first 4 weeks are over. The phase after that is even more tough. He will be given chemo as an inpatient at the hospital that will require a stay of 52 hours each time ... "until the chemo is out of his system, and can't do any more damage to his body." Well doesn't that scare you to death... I know they know what they're doing, but it's my child they're doing it to. And for some reason, I was under the impression that it would get easier for him.

With the exception of last night, BJ has been feeling better each day. Yesterday, we had to go to the clinic for labs. His ANC was 340...the number that tells us how his immune system is working. When the ANC is under 500, it's not working, and he can't be in a place with circulated air without a mask on. To be safe, we just try to stay at home. However, yesterday was fall picture day at his school. He didn't want to miss being in the yearbook, and because he felt ok and wanted to, I took him to school to get his picture made. His hair is beginning to thin, but he still looked good. Some of his friends saw us in the office, and I heard the word spread that "BJ's here!" BJ was embarrassed at having to wear the mask, and was trying to stand where no one could see him. But they saw and word spread down the 6th grade hallway. After we got his picture made, he finally realized that no one cared about the mask...they cared about seeing him. His teachers came and met us in the hallway on the way out, and told BJ that everyone asks about him every day, and they are praying for him every day.  He's so proud to be a part of such a great team of classmates. North Lincoln Middle is truly an awesome school.

We still look for the good in all this, and as hard as it is to see sometimes, it's very evident when we see how the compassion for an 11 year old boy brings people together.