Thursday, December 27, 2012

Christmas update - ANC is 60

We hope you all had a nice Christmas. BJ felt pretty good, but as he likes to say...His immune system is on Christmas Break. 

His ANC is 60...extreme neutropenia, which means he won't be able to fight off anything. 

He finished this set of shots yesterday, but will have to have them again in a later phase. He's really glad that's over for now.

We're back to clinic in the morning, and he's due to begin his next phase of treatment, but we're pretty sure he won't make counts.

Tuesday, December 18, 2012

12/17/2012 update

BJ had clinic on Friday, and we were back to the clinic yesterday for 2 more IM chemo shots. They pre-medicate him with IV benedryl, which causes him to feel real dizzy. The benedryl goes in and we wait while the chemo is made in the pharmacy downstairs. We tried the "freeze spray" as additional numbing, along with the numbing cream and ice, but it still burns pretty bad going in. He's monitored for 2 hours after the shots to make sure he doesn't have another allergic reaction. 

We'll be going to the clinic every other day for the next 2 weeks for BJ to get the shots. All this is because Peg-Asparaginase is such an important chemo drug, and the only replacement is one in the same drug family that is administered by IM shots. It takes 6 doses (12 shots) to replace the one dose he was allergic to. The way he looks at me when it's time to get the shots is just heartbreaking. He is so strong, and yet so scared. 

BJ's blood counts were also very low yesterday, so in addition to the chemo shots, he was also given 2 units of blood, and a transfusion of platelets.

Thank you to all who give blood. It really is a special gift for people who need it. In the last three months, BJ has received 8 units of blood, and several bags of platelets. 

Thursday, December 13, 2012

For BJ...

You are not alone my child

Your body is broken but you will pull through

This pain will only last for a while

And you will be yourself again real soon.

Your smile warms my soul

And the depth of your strength is vast!

Your laughter sheds light into this hole

And your determination to fight remains steadfast.

With unyielding faith and courage

We'll travel this road we're on

One day at a time we will manage

Fighting together through night until the dawn.

The light will begin to unfold

And the sun will rise once more

Your incredible story will be told

And you'll see what He has in store.

So keep your chin up, BJ

And know that we've got your back

The glory comes in the morning

And the sun will shine brightly again...that's a fact!



Isaiah 58:8... "Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the Lord will be your rear guard."   

He's GOT YOUR BACK!! :)  ....I love you BJ

Thursday, December 6, 2012

12/12/12 update - He loves to make people laugh

BJ got his scheduled chemo this past Friday and did well with it. He's still nauseated off and on but doing well this week. He had everyone laughing again at clinic with his choice of blue mustache and Tarheel Santa hat. I love when his personality shines through! 

He's very anxious about this Friday, when he starts a series of chemo shots that will go in each leg muscle. He will go in for 6 days to get these shots that replace the chemo that caused his anaphylactic reaction. I've been giving him chemo shots at home but they don't go into muscle, so he tolerates those fairly well. 

Thank you for your continued prayers, support and encouragement. 

"There is a light in this world, a healing spirit more powerful than any darkness we may encounter. It will emerge through the lives of ordinary people who hear a call and answer in extraordinary ways".... Mother Teresa

Saturday, December 1, 2012

11/30/2012 Day 29...Part 2 of Consolidation Phase

Yesterday became Day 29 of the Consolidation phase. 

BJ's counts were high enough to start the last half of this phase. One of the chemo drugs he was given required infusion of IV fluids before getting the drug, and continued for 6 hours afterward. So, we were at the clinic/hospital for 10 1/2 hours yesterday. 

He was in pretty good spirits yesterday morning, and we laughed so much...he decided to wear an orange mustache to clinic, which later became a wicked uni-brow.  (Take a look at the photos...)

By the time it was time to go home he had started feeling very nauseated. He was very quiet during the ride home and even though he was given medicine for nausea, he still felt it. 

He ate and went to bed. 

Saturday, November 24, 2012

11/23/2012 Day 29...Part 2 of Consolidation Phase

BJ had clinic early yesterday morning. It would have been a very long clinic day, but his counts weren't high enough to get his chemo treatments. He was happy about that, because it means a week break for him.

We'll try again next week....

Thursday, November 22, 2012

Happy Thanksgiving

Being thankful....

For BJ and Carly, and the opportunity to love them every day

For our family, real and adopted 

For friends who show the meaning of true friendship 

For the compassionate medical staff ...and those who cried with me after BJ's anaphylactic reaction

For everyone who cares

For all the cares turned into action ...prayers, thoughts, time, gifts, meals, cards, notes, texts, emails, hugs, encouragement and support

For every single prayer that continually lifts us up

For this journey ... as hard as it is ... that we understand there is a bigger plan ... that this fight has meaning and purpose

Friday, November 16, 2012

11/16/ 22 of consolidation

BJ had clinic this morning. 

He wasn't as anxious about today's procedure and treatment. 

The spinal tap went fine and he had no problems with the anesthesia today. 

We went back to the clinic afterward for his IV chemo. 

His counts are low and his immune system is deficient, but today went well.

Saturday, November 10, 2012

11/10/12 update

BJ did well through the night. He's really "puffy" from all of the IV fluids, but feeling better this morning. He was discharged and happy to be headed home! 

Friday, November 9, 2012

11/9/ 15 of consolidation phase

BJ had clinic this morning. 

He got some IV fluids before going over for his spinal tap with chemo. He did better with the anesthesia this time, and I made sure he was ready to get up before trying to leave recovery, although it still felt like they were rushing him out. 

We went back over to the clinic for him to get his other 2 chemo drugs. 

Things started to go bad when he seemed to be having an allergic reaction to the 2nd drug. They stopped it, and gave BJ some meds for the allergy. 

They waited a while before proceeding again with the chemo. 

They started it up again and he began to have a severe allergic reaction. 

The medical staff flocked on him with an epi shot and oxygen. 

He finally started recovering. 

They admitted him to the hospital for monitoring tonight. 

Hopefully he will have an uneventful night and get some rest. 

It's been a horrible week.

Monday, November 5, 2012

11/7/2012 update - Very rough weekend for BJ

It was a very rough weekend for BJ, and especially a rough Sunday night. 

He had a terrible headache all weekend and threw up Sunday night. 

We thought he was getting dehydrated and with the way he was feeling, the clinic advised us to bring him into the hospital. 

BJ was admitted to the floor about 3:30am Monday morning. He developed a fever as well. The headache was his worst complaint. 

He was given an MRI Monday which showed that he has some inflammation in his frontal lobe, consistent with the side effects of the chemo drug that goes into his spinal fluid. The effects were mild, but will be monitored with more MRIs. 

They also did an EEG, which was normal.

Just more monitoring Tuesday, and more talks with the neurologist and the rest of the medical team. 

He was given morphine for his headache, which finally provided some relief.

He was discharged on Wednesday evening and was glad to be home, although he still was very weak and still had a headache. 

This is the worst I have seen him feeling. It's absolutely heartbreaking to watch.

Saturday, November 3, 2012

11/2/2012 update ...week 2 of Consolidation

Yesterday was clinic/hospital day for BJ again. 

He woke up feeling pretty bad, and it continued all day. He got his port accessed and received chemo in the clinic office, and was later taken over to the hospital for his spinal tap with chemo. 

He felt even worse after waking up from the anesthesia. 

The nausea from the chemo really bothers him quite often these days. He doesn't get to eat after midnight on Thursdays when he has the spinal taps scheduled. 

He slept in the car on the way home, and went straight to bed. He slept all afternoon and evening, except for when I woke him up to get him to drink some water. 

He wasn't even interested in eating anything until about 9pm last night. 

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.

Sunday, September 30, 2012

Does it really have to be a fight against everybody?

Friday, 9/28 was a very stressful day. I'm sure more things could have gone wrong, but it felt like everything that could have gone wrong, did. We had an appointment for BJ's chemo treatment at 0930. At 0730, BJ woke up, was very dizzy and very pale. It got worse after we checked his blood sugar, which was low to begin with. He became sweaty, and was crying and I was doing everything I knew to try to get his blood sugar up. I called in to the endocrinologist on call, and reported what was happening. We told me to do what we were already doing, but then he said if he passes out, call 911. I knew what was going on here, and remembered from EMT class that you can pass out with low blood sugar, but when he said that, this situation became even more urgent. I had to shake BJ to get him to open his eyes and to get him to drink the orange juice. After a peanut butter and banana sandwich, his sugar was up more into a normal range. He got dressed, and we headed down to the clinic. He still did not feel well, but he knew he had to go. We got there at 10:30am, I found a wheelchair, and went back to get him from the car to roll him into the clinic. In the lobby of the clinic, the social worker who I had asked 3 times for my completed FMLA paperwork met us. I thanked her for getting my paperwork in, and she proceeded to tell me (once again - the first time on my voice mail) that she legally had 14 days to get my paperwork back. This was not the day to mess with me, and I told her that I really don't care about her 14 days. She said, well, if you needed it sooner, you should have asked. I reminded her that I had asked 3 times, and told her that I was not going to fight about this right now. She asked if the school had gotten in contact with me, and I said I had not heard a thing from them. She said she'd go work on that, and turned and walked away. That confrontation was the last thing I needed that morning. But it was just another piece of what made a rotten day.

During the wait at the clinic, we needed to check BJ's blood sugar, so he could eat lunch. I brought up again, how my glucometer was 20-25 points higher than the readings from the hospital's meter, and that I'm sure that had a bearing on how low his sugar went that morning. BJ's cancer doctor, Dr. Kaplan seemed to question that my meter was so inaccurate. (Really!?!? ---I know he doesn't know me, but that was just insulting!) I reemphasized that it was that far off the day it was given to me during the initial hospital stay. When the nurse came in to check BJ's sugar, I asked to compare readings. Their meter read 179...mine read 202. I asked for a new one. They brought in a new meter and took the one I had. Finally! Dr. Parker (BJ's endocrinologist), who we had just seen the day before had looked at every reading I documented since the day we came home from the hospital, and determined that we should raise (by 2 units) the insulin I give him at night. I told the nurse that if my meter is off by 20-25 points, then all those readings were higher than what BJ's blood sugar really is. I called in to Dr. Parker's office to let them know that the meter was definitely off, that Dr. Parker had raised BJ's Lantus shot based on the readings in my notebook, but that those readings were higher than BJ's blood sugar actually were, and that this morning's reading of 72 did not fit his symptoms this morning. The woman I spoke to typed it in and said she'd have the nurse call me back. When nurse Kelly called back, she immediately started talking about the variation between meter readings, and how it's expected that two meters would be off by 10-20%, depending on the range of the blood sugar. She would not hear me and my concerns, she chalked it up to just normal variation between meters. My concern is that his dose of insulin is based on the readings that Dr. Parker saw in my notebook, and that those readings were higher than actual. I cut the call off short, because I wasn't getting anywhere with her. It was so completely frustrating! I have to work with two separate departments (cancer, and endocrinology), I am his caretaker, I know my child, and I know what I witnessed that was awful for him to experience this, and I want to make sure that it doesn't happen again. And I felt that I had zero support from the medical staff there.

We ended up being transferred over to the hospital for a blood transfusion about 4:30pm, and it was close to 7pm before the blood came and the transfusion was actually started. I was close to a breakdown. I had planned on a 2 hour trip to the clinic for what was supposed to be just an IV chemo treatment. The 2 chemo drugs take about 45 minutes to infuse, so accounting for the usual wait time for the chemo to come up from the pharmacy, I expected a 2 hour trip, tops. I expressed some dissatisfaction to the nurse navigator, and talked to her about how unprofessional the social worker had been, how ineffective the process for coming in to get chemo seemed to be, that I felt second-guessed by the doctor, that the nurse from endocrinology wouldn't listen, and how I do have another child at home to consider. It was overwhelming.

The assistant VP of the hospital came down to talk to me while we were waiting for his blood transfusion. She asked, and I told her the events leading up to my complete frustration. I want to help them, and see improvements they could make that would help families like us that are having to go through this process. I let her listen to the voice mail that the social work left on my phone concerning her "14 days", and she apologized for the social worker's unprofessionalism. I suggested that for patients like BJ, whose chemo is not blood count dependent, that the chemo is ordered from the pharmacy upon arrival into the clinic. There should be no waiting to order the chemo. It already takes a while for them to mix it and get it up to the clinic. This change in process would be a huge improvement for patients like BJ. The AVP told me that she wanted to share with me (because of my QI background), that they are working on improving their processes, She would like for me to participate in focus groups that will be created to help them improve. I told her I would be glad to, but right now was not a good time for me, that my focus needs to be on other things right now. It did make me feel better that they are working on improvements and that she took the time to listen to my concerns.

It ended up that we were at the hospital for 11 1/2 hours...finally got discharged at 10pm. It was an incredibly exhausting day for both of us.

Day 17 of 29 day Induction Phase

So Friday was a horrific day. We finally left the hospital at 10pm....after 11 1/2 hours at the hospital, and what I had expected would be a 2 hour appointment. 

BJ slept most of the time we were there. He slept while he was getting the 2 units of blood. He slept most of the day yesterday too. He didn't talk very much, didn't eat his usual trough-full of food, and just laid on the couch. It's so hard seeing him like that. He's usually so active. Even with what he's gone through in the past 2 weeks, he's not felt as bad as he did the last 2 days. 

This morning, he slept until 10am. Thankfully, he woke up and is feeling better. He has a headache, but he's up and talking, and ate 4 toaster waffles. It's so good to hear his voice, and see that little sparkle in his eyes. 

When I gave him his medicine this morning, he commented that he felt like an 80 year old man who has to take a handful of pills every day. :) There's that sense of humor again. 

I want to thank you all for your comments in the Guestbook. He reads them, and it helps him to realize how many people care about him and are thinking of him and praying for him.

Friday, September 28, 2012

Day 15 of 29 days of Induction - REALLY rough day

This has been a *really* rough day. BJ woke up extremely dizzy and clammy, and very pale. His blood sugar was very low, so we spent 2 hours trying to get it to come back up. I gave him orange juice, a peanut butter and banana sandwich, a couple pieces of candy, and pineapple juice. During all that, I checked his sugar levels every 20 min or so. At one point his level dropped back down. It was so scary for both of us. He was absolutely pitiful. It was the worst I have seen him yet. Finally his sugar came up enough for him to tolerate sitting up. We were an hour late for his chemo appointment but they knew why and said to come as soon as we could. He had a terrible headache and still was very dizzy, but like the trooper he is, he got dressed and we left. The car ride wasn't pleasant for him either. We got in the clinic office at 1030. We left there at 4:30 to go into the hospital so BJ could have a blood transfusion. It takes 4 hours for the infusion, so this is an incredibly long day. His hemoglobin is low and is most likely what is causing his headaches. In fact, all his counts are low again. His ANC is 230, so the risk of infection is great. Please keep praying for him... It does get very discouraging and he really wants to feel better again.

Thursday, September 27, 2012

Day 14 - a note from BJ

It's me, BJ. As you know i was recently diagnosed with leukemia. It's been rough lately. On Saturday September 15 I got my IV port that I am going to have in the right side of my chest for the next three years. I was pretty upset with the doctors, because they told me it would not hurt as bad as the bone marrow test but it hurt, like somebody had put a brass knuckle in my chest. It's been two weeks now and I have been feeling better lately. I am very overwhelmed about tomorrow (Friday September 28). I have to get chemo and for the next 3 days I will be feeling sick, real sick. 

Day 14 of 29 Day Induction Phase

So it was 2 weeks ago today that all this started. The past 2 weeks have felt like we were in a vacuum. Life goes on around us, and ours has dramatically changed and even thought it feels like a whirlwind, it's also like moving in slow motion.

I took BJ back to see the Endocrinologist this afternoon. Dr. Parker is awesome. I brought my notebook where I've written down every blood sugar check and shot I've given BJ since we've been home from the hospital. He noticed that the sugar levels seem to be coming down. He increased the long-lasting insulin and told me to watch his carb intake but to keep doing what we've been doing with the sliding scale insulin shots. Hopefully the long lasting nightly shot will keep his sugar level lower during the day and maybe he won't have to get as much insulin throughout the day.

Later this afternoon, he wasn't feeling well. He is really worried about tomorrow's chemo treatment. He's so sick of feeling nauseated. The zofran works to keep him from throwing up, but doesn't take the nausea away. He's just really not looking forward to feeling crappy for the next 2 days. 

Wednesday, September 26, 2012

Day 13 of 29 day Induction Phase

We went back to the hospital for blood work Monday (9/24). His platelet level had gone up 10,000 and was now 49,000, so they didn't give him any platelets. We were really excited that it looked good!

BJ has felt pretty well the past two days, considering what he's going through. He is constantly eating. Yesterday, he was craving orange chicken from Panda Express. We ended up getting the ingredients from the grocery store, and I made it here last night. He told me this morning that he got up about 1am this morning, ate 3 packs of crackers, and 2 mozzarella/cheddar cheese sticks. He was back up at 7am, and ate a bagel with cream cheese, and the left over orange chicken. An hour later, he was eating a bowl of salad, and a small bag of kettle corn. Then he finished that off with a bowl of chicken noodle soup.  ....Thank you Prednisone!

Sunday, September 23, 2012

Day 10 of 29

Feeling better this afternoon...yesterday was rough. He felt nauseated most of the day.

BJ didn't want to miss out on his football team pictures, so we got the OK from Dr. Kaplan on Friday that BJ could be in open air and without being around anyone who is sick, going to do the pictures would be just fine.

We didn't tell anyone that we were going to come, so the team was very excited to see BJ. They placed him in the middle of the back row, and he was all smiles. 

Carly is part of the team as notice head water girl in the front row. 

Saturday, September 22, 2012


September 13th started like any other Thursday. I got the kids on the bus to school and I went to work. About 15 minutes after I got into work, my phone rang. It was Dr. Schrader from Lakeside Family Physicians. She said that my instincts were right, and BJ was VERY anemic. His hemoglobin was 5.8. It's supposed to be between 12 and 16. She told me I needed to take him in to the Emergency Department for testing. Trying to subdue my growing panic, I went down the hall to find my boss, and tell him I needed to leave. Instead, I found a friend and she said she would go tell him. I left and called BJ's school to have him pulled out of class and have him in the office when I arrived. BJ asked a lot of questions, and I just told him he was anemic, and we needed to find out why. He was nervous and so was I. When I took him to the doctor the previous afternoon, I figured we would find out that he was anemic, but that they would suggest adding an iron supplement to his diet or something. I never thought that we'd be going to the ED.

On the way down to Charlotte, we had to stop at every light. We even commented on it. Then when we were close to I-85, I heard a noise that sounded like we had ran over a plastic bag....about a half mile later, I realized that my tire had gone flat. I pulled the car over, unbelieving this set of circumstances. I have never had a flat tire. In fact, about a month ago, I had commented that I would like to find my spare, and the jack in the car, so that if I ever needed to, I'd know how to change my tire. I never made time for that.... Now I wished I had. I pulled out my AAA card, and called for roadside service. A short while later, a pick up truck pulled in behind me. I was very nervous about that, but it ended up being a very nice man who worked for Habitat for Humanity. He found the spare, and put it on, but after lowering the car down, realized that the spare was flat. He took it back off, and took my spare to his warehouse, pumped it up, brought it back and put it on. He wouldn't take the money I offered. I thanked him, and we headed on to the ED.

We were in the room at Levine Children's hospital, and Dr. Weekes came in to talk to us. They had already put an IV in BJ's arm, and drew blood for labs. I told him the background story....trouble with the exercise part of football practice, not getting better...but getting worse, thinking anemia, being told that his hemoglobin was 5.8 and coming there. A while later, he brought in a sonogram machine. He said he wanted to see how BJ's heart was beating. He said it looked fine, and then put the wand down on his upper left quadrant...and said...Well, that's not what I wanted to see. His spleen is enlarged. He looked at me in concern, and I said...well what causes that??! He said well there's several things...Leukemia....that's all I remember him saying. I couldn't hold back the tears forming in my eyes. I tried to hide that from BJ, and did pretty well, because he was watching something on TV. Dr. Weekes just looked at me.

A while later, another doctor walked into the room, and I noticed his name badge was from the Pediatric Hematology and Oncology department. He wanted to speak with me outside the room. My heart sank and pounded, and I knew this was bad. I told BJ that I would be right back. We walked through the ED, and into a conference room. The doctor sat down across from me, and said "I am 99% sure that BJ has leukemia."

99% sure my 11 year old, healthy son has Leukemia.....  The words still ring in my ears. What do you mean he has leukemia? He's always been can this happen? We don't know what causes it. We're going to admit him into a room upstairs and immediately give him a blood transfusion to get his levels back up. I'm still reeling from "Leukemia"... How?

I snapped back and wanted to get back to BJ. The doctor said he wanted to examine him when we got back, so I waited in the hallway. I'm fighting back the meltdown that is waiting for me, knowing that I have to have to be strong for BJ. He'll know I've been crying, and it will upset him more. He can't stand it when I cry. I dried it up as much as I could and went into his room. He asked me what was wrong. I didn't tell him what I had just been told. I mean, he didn't say he was 100% sure...there was still that 1% chance that my boy didn't have cancer.  Cancer. What a horrible, dreaded, ugly word. I won't let myself think about this that way. It's Leukemia...Leukemia...not cancer.

Friday, September 21, 2012

Day 8 of 29

We got to Levine's Pediatric Hematology and Oncology at 8:30am. BJ got his IV port accessed (which was very uncomfortable, despite the numbing cream I put on him earlier), and he received some IV fluids. We went down to the hospital and waited for him to be taken back for a spinal tap with chemo. They inject chemo (Methotrexate) into his spinal fluid every other Friday. We finally got back into the clinic around 1:30, and I got him some lunch. He ate 2 chick-fil-a sandwiches, large fries, a diet dr. pepper, and a small cookies and cream milkshake. He was almost finished eating all that when the chemo finally came up from the pharmacy. It took about 30 minutes for it to infuse and we finally got to leave about 3pm.  What a long day.

The chemo makes him nauseated, and generally just doesn't feel good about 2 hours afterward, so it was a quiet night at home.

Thursday, September 20, 2012

Day 7 of 29


Best place in the world. 

I was up checking on BJ throughout the night, but it was still awesome being home. He slept pretty well, and when he woke up, we began what every day will start with... morning medications, and a blood sugar check. 

He was nauseated on and off throughout the day, and very tired, but he was in pretty good spirits. His appetite is amazing...thanks to the Prednisone. He wants to eat all the time, and does. 

It was a pretty quiet day today. We're not looking forward to tomorrow, because BJ has to go back to the hospital for a spinal tap and a chemo treatment.

Wednesday, September 19, 2012

Day 6 of 29

Morning BJ update: he has had a rough evening and night. The 
endocrinologist decided his blood sugar needed treatment, so BJ's BGL 
has been checked every 3 hours during the night and he's had to have 
insulin shots each time because it's still too high. BJ absolutely hates 
finger pricks and shots, so he's pretty mad about all this. He got 2 
units of blood last evening and we're hoping that will boost his 
numbers. He got very nauseated after the chemo but didn't have an 
allergic reaction to it so we're happy about that. We are still hoping 
to go home today, but do not know yet. Thank you for all your prayers 
for BJ

Found out that we can go home after dinner. The endocrinologist wants to check his sugar before dinner, and give him a shot of Lantus. It's a long-lasting insulin. The diabetes educator came in to talk to me about what to do, and the nurse let me check his blood sugar, and I gave him a shot of Humalog. Humalog is a fast-acting insulin, and I will be giving it to him on a sliding scale. Anything over 150, and he'll get a shot. 

We were able to leave the hospital and go home this evening. It was so exciting to be leaving that we "hooted and hollered" down the road. When we got home, the puppies (Charlie Brown and Lucy) were SOOOO excited to see us, and especially excited to see BJ. It was a sweet reunion.

I was especially happy to be home and have a little while with Carly before she had to go to bed. Carly begged me to lay down with her. She was starved of her mommy time. This has been hard on her too... being away from home, not getting much of my attention, but an awesome friend of mine took excellent care of her.