October 27, 2008 - Day 6

Still at the hospital with no sight of going home. Fever is continuing to spike whenever tylenol wears off. I keep hoping antibiotics will kick in, but so far nothing! Maybe we got a false reading on the culture and this is ultimately a viral thing. They took a new culture last night, so we'll wait to see if it shows the same as fridays. Otherwise his ANC number is fantastic and other vitals are fine). It is maddening! I couldn't not imagine how long a recovery takes if your other numbers are low. We thought we'd be right out of here - or at least see some progress, but again, nothing.

October 26, 2008 - Day 5

Well, we are still here at the hospital. Nicholas's fever continues to spike and occaisionally won't respond to the tylenol. He really hasn't eaten or drank much in two days. They are keeping him on IV fluids for hydration. His hemoglobin has dipped below their concern mark (which is about half of a healthy person's level), so he will get another blood transfusion today. Blood cultures from friday night still show negative for a bacteria infection, which is good. He is on a broad spectrum anitbiotic just in case something does show up. This may be a viral thing or a reaction to a new chemo he started on Wednesday.

I'm not sure of today's numbers, but friday and yesterday, his ANC number was high (this is the number that tells them how good your immune system is) and almost that of a healthy person, so we have that on our side.

He is still sleeping, but yesterday he was happy and playful, so we continue to be shocked when we hear he isn't on the mend.

October 24, 2008 - Day 3 of Consolidation

Nicholas didn't want to walk this morning and started running a fever tonight, so we are back at the hospital. Any fever needs to be treated as an alarm for something else that is possibly going wrong. They set us up in our old room (the best one in the unit) and he is on antibiotics awaiting the results of a blood culture. He wasn't eating or drinking either, so he is also back on the IV.
Once we got here, he responded quickly to the tylenol, so that was a relief. Unlike the time before, when it took over 4 hours to break the fever. He soon was out on the floor seeking out goodies from the vending machine.
It was nice to have quick relief, but once you are here, you have to meet certain criteria to get out. Could be a few days if nothing is found in the blood, or could be longer if something shows up in the cultures. It may just be a reaction to the new chemo he is on, but he has to get thru it as the treatment plan has been proven to work with this mix drugs.

Thursday October 16, 2008 - Day 28

In case you didn't get word yet, we were discharged from the hospital last friday afternoon. We love love love being home and everyone is sleeping better in their own bed. We haven't found a free minute as now we are responsible for everything - all the medications, numerous mouth washings, drinking enough? peeing enough? fever? Any pain? Not too mention the feeding all day long - he is still on the steriods. He finished those tonight and we will now wean him off of those - can't wait to be totally done with these.

We have been going back to the hospital every other day for labs and exam. Nicholas seems to be faring well and we haven't had to have anything "extra" like a blood transfusion, or platelets, etc, so it only takes up about 5 hours of my day!

We got his haircut on Wednesday. Not quite the cancer patient cut, but much shorter than we are used to with him.

Tomorrow we go to the hospital early for a 10:00 bone marrow biopsy and spinal treatment. We need to go a few hours early so they can make sure his blood work is good. This ends our "induction" period and the results of the biopsy will determine the exact course of treatment for the next period known as "Consolidation". In this period they will focus on the brain and testicles as that is where leukemia cells tend to hide themselves. We will discuss what this means with the doctor in more detail tomorrow.

Thursday October 9, 2008 - Day 21

Shortly after I posted my big exciting news that Nicholas was off of his IV, he was back on it again. So disappointing. For some reason he is not holding on to enough sodium. Need I remind you that he is living off of funyuns, peanuts, popcorn, bacon, etc? I mean, we are doing are part here! He is allowed off of the IV for short periods of time though, so we try to get out a bit. He even walked with me to Starbucks this morning. It was a nice little outing.

The doctor is going to have a renal specialist take a look at him to make sure that they aren't missing anything. He will start taking his steriods orally tonight and they were making a call to CVS so we can contiue them as an outpatient. They only need to be taken for one more week, so we won't need much. The nurse also just came back in to say they were going to take him off of the IV again (everyone said this would be a roller coaster!) All of this in preparation to go home, so that is a good sign.

He is doing well here and we can'[t speak highly enough of the care we have received here at Georgetown. Nicholas is content to stay here where he has attention 24/7, gets to eat anything he wants (except fresh fruits and veggies that is) in a lazy boy while having full control of the TV. What's not to love? Me on the other hand, I am ready to get out of my cell. They have taught me how to care for him at home and I am ready to put it into action.

Tuesday October 8, 2008 - Day 19

Today's big news as we complete our third week here (the first two days didn't count, so that is why they call this Day 19, but for us it has been 21) is that Nicholas was finally able to come off of his IV. He has been on this for the entire time and it is so nice to just be able to pick him up and walk around without worrying about the cords. Even though we are still here, it is our first taste of normalcy in what seems like forever! He needed to be on the IV for hydration as when the cancer breaks down, it needs to be excreted and if you aren't hydrated enough, the junk can get trapped in your kidneys and require dialysis.

Nicholas is going strong, but has lost some of his strength and coordination to walk, because he has basically just been moving from his bed to the lazy boy chair for about a week now. I am surprised at how quickly this could have been lost, but we are working on getting out of the room a bit and walking the halls. He hestitantly agrees to wear the mask (which was what was keeping us in the room), but I just force the issue and take him out complaining. One hallway has an underwater mermaid theme that also includes an "I Spy" list. I can distract him with that and make him stay out longer than he would chose too if he could find his room. I think he will be back to normal in a few days of this. I think he was also worried about stepping on his lines, but as I said before - no longer a problem! It is so nice.

Here is a picture of him working on a craft in our room that a hospital volunteer came by with for him to do. His face is bloated from the steriods, but should return to normal when he comes off of them in about two weeks. He has only put on .8 of a pound.

It is also nice to hear the word "remission" being used. But we are aware that the fight is far from over. It is a relief to know that he is responding so well to the treatment, but a majority of the kids do. Nicholas is in the norm rather than the exception. Your blood is constantly regenerating itself, so if you respond to treatment, they can get you in remission quite quickly. The real battle is keeping it from coming back and that is why the treatment plan for boys is about 3 years. When we do finally get out of here, Nicholas will come back for outpatient treatments about three times per week for about 6 - 9 months. During this time he will lose his hair. After that we will move into a maintenance phase and the hair should come back. Fortunately, being a boy, even a peach fuzz will seem normal. Our biggest job will be to keep him from getting sick. They have assured us that he will get sick and require additional hospital stays, but obviously keeping that to a minimum will be in his best interest. Today I learned that even some of the treatments will require hospital stays.

As for when we will get home, it is now a wait and see kind of thing. He is in his final days of antibiotics from last weeks fever, but otherwise, what he is getting here, we could be doing at home. We are basically waiting for his immuune system to work it's way back up. This could jump quickly. But, with each chemo treatment, the immune system takes another hit. He is due for another treatment on Friday and again the next friday. How kids can ever get out of the hole, I can't see it. So we could still have quite a bit of time here. But, at least we are off of the tether and that makes a world of difference.

Monday October 6, 2008 - Day 18

REMISSION (under 5%)!!!! Attending still waiting on formal written report, but both concentrated blood from the marrow and the slide show great results. Just what we needed to hear. As you can imagine, we are beside ourselves. We will have to battle this for a few years (if they don't keep treating it, the leukemia will come back), but this is the best news we have gotten in weeks.

We greatly appreciate your thoughts and prayers. They are obviously working.

Saturday October 4 2008

Just wanted to report that the final chromosonal marker that we were waiting for - the Philadelphia chromosone, came back negative - which is a good thing. This keeps Nicholas in the standard risk category...for now.

Yesterday's bone marrow biopsy took place today at 9:00 and went well. It is only a light sedation, so Nicholas came out of it easily and ready to eat. We will get the results on Monday and as I have mentioned before, they want to see the leukemia cells in the marrow under 5%. The waiting has us on edge, but until then, at least we have hope and that is better than hearing it isn't under 5%. Hopefully, we were given the extra day by the grace of God to get the results we need to hear.

Until then...thanks for waiting with us.

Friday October 3, 2008 - Critical Day 15

Nicholas will not be having his bone marrow biopsy today as scheduled. Unfortunately, it was 10:00 (time for the procedure to start, but things were running a few minutes late) and I stepped out of the room to get Nicholas's favorite blankets from the dryer (they were soaked from not being changed in the night and where he is being pumped with liquids his diaper is like a water balloon), he quickly got out of the chair and got into some peanuts that we have had here for him. I hid all of the food last night, but somehow, in the three minutes I was out of the room, he found them in the zipped suitcase (he did see me put them in there, but never has he been so resourceful - I guess that is the steriods doing ther job). This has sent everyone scrambling as to what to do - maybe if it weren't Friday, this wouldn't be such a big to do, but due to the weekend, it sets all the labwork in a spin. Right now it is rescheduled for 8AM tomorrow and they assured me that this won't make a big change in things. We will have to wait until Monday for results. Even then, I will question the accuracy of the test results that sat a bit..really, really devastating. My mom thinks that maybe Nicholas just needed one more day to get where he needs to be and that this may have been a blessing. Time will tell, but for now, this is very upsetting.

On another note, he is not retaining enough sodium (how this is possible with all the pizza, nuggets, funyuns, peanuts, bacon, etc that he is eating I have no idea) or phosohorus, so he will be taking supplements for that which we will continue at home. He no longer needs one of the anitbiotics he was getting from Monday nights ordeal, but will stay on the other one a few more days. The blood cultures taken that night showed no signs of bacteria, so that at least was good news.

The doctor is checking on the Philadelphia chromosone results I spoke of yesterday. Hopefully we will still hear back on that today, so it isn't a total bust.

Rich will be here tonight and I will come back on Sunday. I just need to get some sleep. My call button doesn't work, so when the machines alarm for one reason or another I have to get up and go to the nurses station (this happen several times) and the patient next to me ( a 2 or 3 year old little girl) screams and slams the door all night. I have been told she might be leaving today - please please please! I am obviously not on top of my game and that help set off the downward spiral of today. What can you do? Just keep waiting.....

Thursday October 2, 2008 - Day 14

Even though it is only Day 14, we have been here 16 days - almost 2 1/2 weeks. Rich says I am becoming a little bit like Jack Nicholson from The Shining. After Nicholas got sick earlier this week, we have been confined to our room and have turned into slugs watching video after video. I can't even have a conversation about the weather, let alone what is going on with the debates! I can quote lines from Nemo and Toy Story though!

Enough about me, we are here to talk about Nicholas. Tomorrow (Friday) is our big day - Day 15 when certain markers need to be met. Specifically they want the bone marrow to show under 5% of leukemia cells. Last week we were at 60% (down from the 84% we started with, but still pretty high nonetheless). They have assured us that kids do drop to 5% in this second week and that it doesn't require a freak occurrence, but obviously we would have preferred him to be have been much closer to 5% last week. If we don't meet the marker, they will change up his current treatment plan to be more aggressive and try to get it under 5% by day 28. I can' stress enough how we need this information to be good tomorrow.

Also tomorrow we should hear back about the final chromosonal marker which will determine if Nicholas stays in standard risk or moves to high risk. It has to do with something called the Philadelphia chromosone and I can't begin to know how this this all works. One of the doctors on Nicholas' team feels that because of another chromosonal abnormaility, Nicholas shouldn't also have this one. Have no idea what other abnormality they found, but I hope he is right! The other chromosonal tests came back favorable.

Bottom line is that I hope tomorrow we are rejoicing in good news and I will post at the first opportunity, I appreciate your concern (since you are reading this I know you are worried too) and I ask that you pray, pray, pray for good results.

Here is a quick video of Nicholas taken tonight. He is a little swollen from the steriods and fluids he is being pumped with and has rubbed food and butter all in his hair, but he is still the same little guy you are used to seeing.