We are home!!

We are home and so happy to be here! Ben was very excited to have two of the cats greet us at the door (Zorro and Shaggy) and now we are anxiously awaiting David's return from Grammy and Poppy's house!

We will need to go to the Infusion Center every day to restock the antibiotic pump and so they can check his blood to make sure all is well. Ben starts the next phase of treatment tomorrow so he will be receiving a chemo drug (Vincristine) - but he has had it many times before and if we take the anti-nausea drug it doesn't have too bad of an impact on him (and even when he has a bad reaction it usually passes in about 12-24 hours). He will need the pump for about 10 days but then at the end of next week they will finish the antibiotics and take out the current PICC line. Ben will be free of it for about 6 weeks so baths and showers will be much easier and I believe he will even be able to swim (I need to check for certain tomorrow with the doctor).
He will be taking other medications during this next phase but most of them are oral so hopefully won't be too bad. We will see whether there will be any new enticements offered by Scott make him take the medicine!

The best news is that as of now Ben is scheduled to start school next week with everyone else!!! He is so excited! We plan on doing some shopping for a new lunch box and clothes. He even gets to go use the gift certificates he received for his birthday. He hasn't been able to go into any stores for weeks because he has been neutropenic for so long but now that his numbers are up we will be doing some major shopping!

CORRECTION!

LOL, we should start getting used to the 180s.

They are not removing the PICC line. There was a lab error -- the infection is gone. So Ben is going home TODAY!

He'll continue to get antibiotics through his PICC line using the pump. When the course of treatment is over (I think in like a week or ten days or something like that), they will remove the PICC line because he won't really need it during the next phase of chemo, which will start soon.

Thanks to everyone for the kind messages, good thoughts and prayers. Ben can't wait to come home!

PICC Exchange

They are removing Ben's PICC line today. Apparently it is a pretty simple process -- you just pull it out. Takes like two seconds.

Ben is really upset about it. He's going to get an IV, and he hates being stuck. He'll then stay in the hospital, getting antibiotics through the IV to kill off the infection that was in the old PICC line. On Friday, when the infection should be gone, he'll get a new PICC line and be sent home. Assuming all goes as planned, of course.

The good news is that Ben should be able to start school with the rest of his class next week. (Keep those fingers crossed for him!)

Good news and bad

Ben is still in the hospital. I stayed with him again last night for work scheduling reasons; Nicole is there now and she'll stay tonight.

The good news is that Ben's counts have improved considerably. He is no longer neutropenic (or at least he wasn't last time I heard), but he has a bad infection in his PICC line. The doctors are seriously considering taking it out (it has been in for more than 4 months now), which would help get the infection under control. The problem is that Ben would then need to be stuck every time they have to draw blood, which is often daily (more frequently when he is in the hospital). Even with an IV in the hospital, they often have trouble drawing blood and have to stick him. So we'd like them to put a new PICC line in, but that may not be possible right away since he has the infection.

We'll try to keep everyone posted. No clue when we'll be discharged.

Saturday Night at Cedars!

Ben and I are in his room taking turns catching fish on his PSP. I can't think of a better way to spend a Saturday night. In fact, we were explaining to our nurse that the Pediatric floor at Cedars is just another vacation home for us, sort of like our time share. Great place to hang out and relax. And we like the food. :)

Hospital Update

We spent the night in the infusion center. Ben received two different types of antibiotics and we were hopeful that they were working as his temperature went down in the middle of the night. Unfortunately, it went back up to 101 by about 7:00. Also, the blood work came back and Ben has a bacterial infection so he will be admitted to the Pediatric floor even if his temperature stays back down. We have not been given any predictions on how long he will need to stay but we are really hoping it won't be for very long this time!

On the positive side, we received a report on Ben's bloodwork this morning and his numbers look good! For the moment, he is not neutropenic. We are excited - maybe now we can go to some stores for some back to school shopping after he is released from the hospital!

Hospital update

Ben's fever is over 102, so he is being admitted. Nicole will spend the night with him.

Another fever . . .

Ben has a fever again, so Nicole has taken him to the hospital. They probably will be in the Infusion Center overnight. If the fever doesn't come down, he'll have to be admitted. Ugh!

Numbers continue to climb

We are back from the hospital and we keep getting good news (nice change from the past month or so). Although the numbers are not high enough to start the next phase of treatment they continue to go up. Ben is still neutropenic so all the precautions are still in place but we are optimistic that he may be out of the "danger levels" and off the neutropenic precautions by Monday...who knows maybe will even be high enough to start the next stage.

This week has been a bit of a challenge because David and I have been fighting colds. It can be a little complicated taking care of two boys when one is sick and the other one cannot be exposed to any type of germs - and of course all they want to do is play together! We have used a lot of Lysol and Purell in this house over the past few days. Even more than usual...and that is saying a lot!

So many good people . . .

Nicole and I continue to be amazed by how many wonderful and giving people there are in this world. We want to catalog all of the wonderful things people have done for us, but there have been so many that it's tough. A few recent examples:

* One of my out-of-state clients is in LA on business this week. She has many commitments, I am sure, but she is spending a good part of one of her days here going to Cedars to donate her A- blood for Ben. THANK YOU!

* A fireman in Ventura County who we have never met keeps sending things to Ben and David, complete with cool "fireman" letters. Today they got Dodgers bobbleheads, Ventura Fire Department baseball caps with his station number on the front and their full names on the back, and uniform patches! THANK YOU!

* Good friends of ours helped out with Ben's birthday party by picking up items we needed for the party and coming early and staying late to help with set-up and clean-up. THANK YOU!

* A good friend who has been following the blog saw that it was Ben's birthday recently and stuffed our mailbox with a PSP game for him -- coincidentally the one he's been asking for. THANK YOU!

* A special operations soldier in Pennsylvania who we have never met keeps sending unit patches, posters and other items to both Ben and David. THANK YOU!

* Family members have been working overtime to help us out in a million different ways. THANK YOU!

* People at my office and a different group of people at the hospital got together and gave Ben and David backpacks full of toys, school supplies and other goodies. THANK YOU!

* Many people have been making donations to the charities in the right margin. THANK YOU!

We undoubtedly are forgetting people, but we want to thank everyone. You are all AWESOME! THANK YOU!

Marathons are tiring . . .

Although we're past the initial shock and fear of Ben's cancer, every once in a while we remember how long this is going to take. Still another 3-4 years to go.

It really is draining. Ben often does not want to take his medicine, he gets grumpy and tired from the side effects of the medicine, and he gets frustrated with the limits on what he is allowed to do. Right now, while he doesn't have to go to the hospital for a few days, he is still neutropenic (i.e., his white blood cell count is so low that we have to take special precautions against germs), so there are a lot of things he'd like to do but can't. Like go to a restaurant, or a store, or play with a large group of other kids. I wish he didn't have to deal with all of this. And frankly it is no fun for Nicole, David and me either.

We are expecting Ben to be able to go back to school in September, but that assumes his counts come up. They are slowly climbing, but I have to admit I am a bit concerned about it. :(

Finally!

Well the numbers haven't gone through the roof...but at least they are going in the right direction now. Slowly but surely!! Ben received a hemoglobin transfusion Sunday night and it really gave him a boost. The number is still below what we would like but not in that terribly low level it couldn't seem to get out of last week. Also, his platelets are doing great!
He continues to be on the antibiotic pump and receive antibiotics at the hospital every day (this is due to his very low white blood count)...but they think they may be able to stop soon if the numbers continue to creep up. We are just so happy that he hasn't needed another transfusion in a few days.

The doctor still says that if we can get his white blood count up that he will be able to start school in September as long as he has the energy. If things stay on track he will be able to keep a pretty regular school schedule until about mid-October when the next intense phase begins. We are looking forward to a break from the hospital and some normal days!!
We are all smiles over here! :)

Great party! But . . .

The birthday party went very well. We reserved the picnic tables at a local park, brought in a gigantic "bouncy" (one of those giant blow-up things the kids jump up and down in -- this one also had a humongous slide), and hired two actors to come in fatigues and put the kids through "boot camp." One of the actors was "Captain Sillypants" -- they were hysterical and the kids all had a great time.

When the party was over, we invited some family members back to the house, but Ben and I had to go to the hospital for antibiotics, so we missed that. His hemoglobin was really low, so they told us to go home until his blood is ready, then come back for a transfusion. Nicole and Ben will go back shortly. Nicole is worried that they may need to spend the night, but hopefully they'll be able to come home. Meanwhile, David and I will wreak havoc while Mommy is away. We do that when there is no adult supervision. :)

Saturday Report

Ben and I just returned from the Infusion Center. He got antibiotics and also got hooked up to a pump to get antibiotics for the next 24 hours. Nicole was concerned about the pump because Ben's birthday party is tomorrow and it would interfere with his ability to participate in the festivities. But the nurses told me we can disconnect it before the party, so that's good.

I was very happy to get a couple of letters from Cedars today indicating that a couple of my partners recently made donations to the Pediatric Hematology-Oncology Program in Ben's honor. Thanks to both of you! The money really will help some needy kids. If anyone else wants to make donations, there are links to several good charities (including Cedars) in the right margin.

And thanks to everyone for your continued thoughts and prayers. We continue to receive nice e-mails from people, and they do lift our spirits.

Patience

Ben's numbers are still extremely low. He received a platelet transfusion yesterday and hemoglobin today in addition to the antibiotics. He is totally exhausted (not surprising considering the low hemoglobin number) and frustrated that we are still having to go to the hospital on a daily basis. His white blood count is also very very low (I think the report lists it as "panic level"). As we have said before, this is all a normal side effect of the chemo but during this time he is very susceptible to infections so we continue with the food restrictions and our war against germs and bacteria!

We are doing our best to be patient because we know that at some point the numbers will go up!

Will the numbers ever get higher???

All is going well here...except for the fact that Ben's numbers are still being stubborn. We were hoping that last week and this week were going to be easy but instead we are at the hospital every single day!!! The doctor told us to schedule appointments for the remainder of the week. They expect Ben will need the antibiotics as well as other blood products this week. As soon as his numbers start coming up and they take him off the antibiotics I think we are going to have to have a celebration.
I love all the people at the infusion center - they are absolutely wonderful to us - but we would LOVE a day off!!!

Kojak is Coming!

Ben's hair is really starting to come out. It comes out very slowly, just a little clump at a time. But it is definitely coming. So those of you who will be shaving your heads, get ready!

Ben is still getting daily IV antibiotics because his numbers remain low. No transfusion today, so that's good, I guess. We are having a little BBQ today -- I am grilling baby-back ribs.

The Playroom, Part I

I got permission to post photographs of the playroom a long time ago, but forgot to do it. This is the little room at the Cancer Institute where kids can go while waiting for appointments, lab results, etc. Especially when you first start going in for treatment, this room is really invaluable. The Cancer Institute is a pretty scary place until you get used to it, and the playroom is a wonderful way to escape the reality of the hospital and get through the day.

The playroom and other things like it are funded by the Pediatric Hematology-Oncology Fund at Cedars. This is the primary cancer charity we have chosen to support. If you would like to join us in helping kids with cancer who are being treated at Cedars, you can click the link in the right margin. Be sure to specify the account number so your donation goes to the right place.

I also took pictures of some artwork in the playroom that I think is pretty special. I'm hoping to get some of you guys all choked up so you'll pull out those checkbooks and credit cards. :)

I put the photos the next (technically, the last) post so you'll see this text before the pictures.

The Playroom, Part II

Here they are!

Calm Day

Well I think I have stopped shaking from yesterday's injections! Today was much easier. We had to go to the Cancer Center but only to check Ben's numbers and so he could receive his antibiotic transfusion.

Unfortunately, his numbers are down again so in addition to continuing on with the antibiotics tomorrow he will also be receiving a platelet transfusion. Ben is kind of bummed as he was really hoping to avoid the hospital on his birthday but we are going to make the best of it. As we have learned, there is no reason you can't have fun just because you are at the hospital!