Better Day!

Ben woke up feeling much better this morning. His tummy did not hurt and although his back was sore it was much much better! Ben was absolutely determined to play in his hockey game this afternoon because it is the playoffs. He had a fall near the beginning of the game which took its toll on his back...but the great news is that his team won 4-1!!! They are off to the championship game next weekend. He is very excited!

Feeling Lousy

Ben went to school this morning even though his back was hurting a little bit. He really didn't want to miss the school day. He promised that he would have the teacher call me if he was in pain (plus I called the teacher to give her the head's up). David was MVP in his class today so Scott and I were at the school around lunchtime to take part in the presentation, which was extremely cute, so we also had a chance to check in on Ben at that time. Ben said that he was still in pain but he really wanted to finish out the day. Unfortunately, things went down hill as the day progressed. By the end of the school day Ben's back was really hurting and his tummy was really upset - he just broke down and sobbed when we got home. He decided there was just no way he could handle hockey practice so we watched Prince Caspian (the boys loved it) and they took a nice long bath but Ben was just feeling awful by bed time. You could tell just by looking at his face what a toll the past couple of days has taken on him. We have a couple of different medicines to help with the tummy trouble created by the chemo...but he just broke down when I mentioned them and begged between sobs not to make him take another medicine. He said, "I have taken so many different medicines the past two days and it has been really tough on me. Please don't make me take anything else!"

The poor guy. I think a good night's sleep is going to make a world of difference. I am really hoping and praying that is true not only because this is so tough on him but also because he has a playoff game tomorrow afternoon for his hockey team. If they win they will go to the championship game next weekend so he will be so sad if he is too sick to play.

Spinal

Ben was sad this morning because we needed to go into the hospital for his spinal tap but we went and all went great! He was a little more serious than usual at the beginning but then after he got some drugs in him he was a regular chatter box. He had everyone cracking up as usual. Before he was even able to flip over (he needs to spend quite a bit of time on his tummy right after the procedure for the maximum effect of the medicine) his nurse called with the results of his labs and everything was great. White count at 2, hemoglobin at 12.2, platelets at 185,000 and polys at 1234. Oh, and because he has grown his medications have all been increased - at first he did not like the sound of this but I went through the increases and showed him how small they are so he decided it was okay after all.

Ben was feeling great after the procedure so we went for a special lunch with Scott and also had a chance to hang out in Scott's office. Ben was determined that he not miss his guitar lesson this afternoon so after a short rest at home I drove him to school for the class. He has a little bit of difficulty going up and down stairs and his back bothers him in certain positions but he was not going to miss that class! I think after this long day he is going to sleep well tonight!

Sad Day

Today is not sad because anything in particular happened and Ben is fine, with the exception of being upset he needs a spinal tap tomorrow, but I am just blue today.

I was looking up an article on leukemia for a friend and started reading some of the information about relapse and long term side effects from all of the drugs needed to get rid of this terrible disease. I have read all these things in the past and know the facts...but it just hit me like a ton of bricks today. I go day to day focusing on the positive - sometimes because I feel I need to for the sake of Ben and David but most of the time because that is how I truly feel - but today was not one of the those days.

I'm angry and sad and just frankly feel like this all sucks. Ben has been through so much and so has David and it is just such a terrible feeling to feel so helpless and at the mercy of a disease. All I want to do is to protect my children and I feel like I can't do that. This is such a horrible feeling. I have a wonderful and amazing child who has to deal with things no child should ever have to deal with and it just breaks my heart.


I know tomorrow I will wake up and we will get ready for the hospital and we will be our normal goofy selves...but tonight I just want to crawl into a corner and cry myself to sleep.

Whale Watching

Ben had a fantastic day yesterday with his 2nd grade class. They went out whale watching and saw a whale as well as seals and dolphins. He was so excited!! He brought a disposable camera so we are going to get the film developed this weekend - hopefully he got some good shots.

We have a busy day today. Hockey class for David in the morning, Ben's hockey game this afternoon and then a great friend is having a birthday party. She has asked that in lieu of presents everyone make a donation to the Cedars Pediatric-Oncology fund in honor of Ben. Such an amazing and wonderful thing! Thank you Tanya!!

Monday Update

We had a bit of a scare last night with Ben having a very upset stomach and vomiting (even with no chemo) but all is great today. Ben woke up this morning feeling great and was excited to go to the Staples Center and skate with the Kings mascot, Bailey, as well as a bunch of other NHL mascots. David had a great time harassing all of the other NHL team mascots (he was nice to Bailey) and Ben had fun getting autographs from them!

Great day!

Back to school tomorrow after a nice 5-day weekend. The boys are happy to see their friends and teachers...but I'm sure won't be motivated to get up and moving first thing in the morning!

Saturday Update

Nicole, David and I all are fighting off what seems like a minor cold. No big deal for a normal family, but if (more likely, when) Ben gets it there is always the risk of him ending up in the hospital. So we're hoping we get through this with no problems.

Happy Valentine's Day to everyone!

Whew!

Ben took the last of his steroids for the month last night so we are all relieved. The steroids were particularly rough on him this month, as was the Vincristine, so hopefully he will feel 100% again soon. Of course, it didn't help that he was also dealing with a bad cough all weekend and he missed another day of school yesterday. But things are on an upswing today so we are happy!!

Go Belen!

Belen Scully-Power, a lawyer at Scott's firm, is doing a Team-in-Training event to raise money for the Leukemia & Lymphoma Society. If you'd like to support her, go here:

http://pages.teamintraining.org/los/sdtri09/bscullypower

Thanks Belen!!!