Thursday December 11, 2008 - Day 24 Phase Three

Nicholas had to go back to the hospital Tuesday because he had another fever, but fortunately this time we didn't have to stay! They took blood cultures (which are still brewing in the lab) and they started him on an antibiotic and we were on our way. We had to go back to the clinic the next day for a second dose of the antibiotic, but while we were there they were having a huge Christmas party for the kids and their siblings. It is pulled together by the Farifax County Police Department. It was amazing to see the amount of donations. My kids won't even need to have Christmas after that. We even made the 5 0'clock news, Here is the same article posted on the web.

http://www.wjla.com/news/stories/1208/576725_video.html

It was cool and Nicholas likes watching it over and over. He loved the reindeer you see in the background and couldn't get enough of him, but he was very leary of the Snowman for some reason. It was a good day. Zach wasn't there, becasue he had an english test, but he got gifts too - itunes card and a Best Buy card as well as toys. The gift giving was very generous. So, to push it for kids elsewhere, remember to donate to your local Toys For Tots.

We go back to the clinic tomorrow for a check up (today is my only day not going this week, but then again it is only 10:00! so you never know), but he is feeling good. Next treatment includes a spinal tap and that will be next Thursday. Still looking good for the holidays.

Enjoy the season.

Decmber 6, 2008 - Day 19 of Phase 3

No exciting news to report. It was just pointed out to me that I hadn't posted in a while and I wanted to let everyone know that things are going as well as it can. We are currently on Day 19 of phase three and Nicholas is still full of energy and loving everything that has to do with Christmas. We were even able to take him to see Santa last week.

He gets a chemo treatment every ten days and we go back in between for a lab check and exam. He doesn't need to take much medication at home right now which makes it nice when we are already busy with other seasonal stuff. This phase should get us through Mid-January when we will begin a tough two month phase. But after that, we should move into a maintenance phase, so that keeps us hopeful.

Enjoy the season. We are making sure it is a good one for us.

Monday November 10, 2008 - Day 20

It was pointed out to me that I haven't blogged in quite a while, but overall, that is a good thing. I have every intention of keeping everyone posted with what is happening, but somehow, when I get home and am not just sitting around a hospital room, time just escapes me. If I am not giving meds and playing with Nicholas, there is laundry, dishwasher, beds, - everything else that keeps us all busy.

We were able to take Nicholas trick or treating on Halloween. It was a perfect night - not too cold - and he had a good costume for keeping warm. We thought we'd only make it around the cul-de-sac, but ended up making it to a good chunk of the neighborhood. He had a blast and kept saying "more". It was a good time and I look forward to scrapbooking it.

Since then, it has been days filled with a happy little boy who's activities we just limit. We do go to the park, play ball in the backyard, and let him drive his jeep around. All is good. This has been a "slow" month in terms of treatment and we finish this phase next Wednesday. We have been grateful for this as the next two phases last 56 days each (as opposed to the 2 twenty eight day phases we almost have behind us), but these phases look pretty intense. We are making our way though and are learning that this is manageable.

Please continue with prayers for Nicholas. They are working.

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.

Tuesday September 30, 2008 - Day 12

Well, we hit our first rough patch yesterday afternoon when Nicholas came down with a high fever - enough to concern them to do a blood culture (results in a few days) and begin a broad spectrum anitbiotic. They also gave him tylenol to control the fever and wished for the best as his immune system right now is nearly non-existent. Very Very scary time for us. It really brought the reality of his condition to the front burner. Not that we aren't already living it day by day, but even though we are here, he seems so healthy. It was easy for us to think that maybe we would be able to get off easier than most, but reality reared its ugly head yesterday and sent us into a tailspin. He became very hot and lethargic and we were told that if it was a viral thing that he would just have to fight it himself. This left us panicked since he basically has no immune system to fight anything right now.
When he wasn't responding as quickly as they anticipated him to after they gave him the antibiotics and tylenol, they transferred his care to the pediatric intensive care unit for more one on one care through the night. His heart rate was extremely high, so they began pumping him with more fluids to slow it down. Fortunately Nicholas now started to show some signs of his regular self and I started to relax, but then PICU still ordered a chest xray (nothing was found) and felt he should be on a montior for heart rate and oxygen level for the night. During this we were told that his blood pressure was returning to normal, but since his blood pressure was high without the fever, that wasn't a good thing and they needed to bring it back up (odd, but they needed to do that to keep him stable). They drew more blood for labs and determined he needed more platelets and another blood transfusion, Monitors and pumps were beeping all night long. The nurse was so loud in and out of the door - it was horrible. We only got to sleep from 4:30 - 7:30. I thought I would lose my mind.
I was told that the residents on duty, the PICU attending and Nicholas's doctor were on the phone every hour. With this course of action, his fever broke during the night, but was back up a bit high this morning. When to doctors rounded they were no longer concerned and were happy to see him coming around. They said that this type of incident will happen regularly will require a hospital stay each time it happens. For now, he will continue the antibiotics for the next 7 - 10 days. Our hopes of getting out of here by Friday have been scrapped. This was the first of many bumps in the road.

Monday September 29, 2008

Well it appears that we counted our chickens before they hatched, so we a bit down today. After talking with Nicholas's primary doctor here at Georgetown, we mistook the good information we were given yesterday. We did get good news, but rather than being good news that he has certain chromosomes that give a better than average prognosis, the real diagnosis was that the markers that have come back have been favorable and keeps him in a standard risk rather than putting him in a high risk category. We are still awaiting news on a third marker to confirm that he is not high risk. That information should be in by Friday. He did not meet markers to move him into low risk. Most kids don't meet those markers, hence the term standard risk, but we liked our interpretation of the news better and got our hopes up that the news meant low risk. It is still good that we aren't high risk (yet), but still a bit disappointed that it wasn't what we thought it meant, so we feel the loss.

On another note, we may not have to stay the whole month. We are nervous to bring him home and have to take on the sole responsibility for his care. So many things to monitor and medications to administer, but they won't kick us out until we are ready. He will be seen as an outpaitent at least three times per week, so we know he'll be getting quality care at least every other day. They have mentioned the possibility of home nursing care for a while, but you know no one wants to drive all the way to Poolesville! I know we can do it, but it is a lot to keep track of.

Sunday September 28, 2008

Nicholas is still doing really well considering the circumstances. He is still full of energy and personality. For this we are grateful. Nicholas's peripheal blood (what they take from your vein when you have blood drawn) shows no sign of leukemia. Friday's bone marrow biopsy, however, still shows that 60% of those cells (blood is made in the bone marrow) are leukemia cells. Although this is down from the 84% it was when we brought him in, we would have liked to seen it at 20 - 25%. Next friday they want it under 5%. Doctors are not concerned though and do see kids go from 80% to under 5% in this second week. Even then, there would still be two more weeks in the "induction" period that they consider a reasonable amount of time to work to that under 5% number. With that said, he will have to have another bone marrow biopsy next friday. Of course, I will post the results.
But the great news of the day is the the chromosonal tests they did from the first bone marrow biopsy came back as favorable as they could. He has the chromosones needed to do really well with treatment and is possibly in a low risk category. We will talk with his doctor about it tomorrow to get the specifics, but everyone around here was a buzz with what great news that was. We aren't positive with that that means, but it might mean he can follow a lesser course of chemo. Keep your fingers crossed and prayers going. Several times over the weekend things happened and I really could feel the hands of God reaching out to us. It is a powerful thing.

On a fun note, here is a little video of Nicholas jamming with my Ipod. "Low" by Flo Rida always puts a smile on his face.

Saturday September 27, 2008

Today I got out a little bit to escape the reality of living at the hospital. It may have seemed weird to be out and about carrying on as if everything was okay, but they really stress that here, so I am following doctors orders. I am able to do this, because I have put up blinders and can only accept one result - thay my baby is going to be fine. It is a long road and we have to endure it, but I have to have the mentality that he is going to be okay and there is no other option. The doctors have said that given the results we are getting that there is no reason to think otherwise, so I am going with that.

Friday September 26, 2008

This morning Nicholas woke up starving! He hasn't hardly eaten a bite in a week, but now that he couldn't have any food because of the byopsy and spinal tap, he wants to eat everything he can find. Needless to say, it has been a rough morning trying to keep his mind off of food until 1:00!

Putting your child to sleep when you are already so emotional is very tough. I cry every time. But I do what I have to so and then slip out to starbucks so I don't dweel on it. He did well and hopefully we will have some results by 7 or so. They still expect it to show signs of Leukemia since it has only been a week, but things should be better than last week if he is responding well. Preliminary blood work already shows it is, but the truth is in the bone marrow.

He came out of his procedure asking for Funyuns, but fell back to sleep in his crib before he could eat any. They came in to do vitals since they gave him more platelets before his surgery, so he was up quickly and feasted on funyuns, tacos, chips and nacho cheese. He is very happy snacking on whatever he asks for. Life is good right now.

Those of you wondering what kind of diet he is on - well the nutritionist said that although it would be great if he ate a balanced meal, they really just want to keep the calories coming in. He can't have fresh fruits and fresh vegetables, because of the pesticides and his immune system is compromised. She will start him on some pediasure by Monday. She says kids can live on that if need be.

Rich is taking over now and I get a little break. Hope to see some of you this weekend.

Thursday September 25, 2008 - Day 7

Well we are about to complete our first week here (the first two days don't count since Nicholas was not receiving chemo at the time). Three more weeks are going to get long here, but they still keep us busy and we had a glimmer of hope today that maybe we won't have to stay the entire 28 days.
Medically speaking today was uneventful. His white blood cell count is now well into the normal range, but the hemoglobin still needs some work. He didn't need any platelets or blood transfusions today, so that was nice. Tomorrow around 11 or 12, he will be put under for another bone marrow byopsy and chemo administered to the spine. This will be the plan for every friday. I don't like seeing him put under - especially when they have to re-cover the risks involved. But what can you do? It has to be done, so you just pray that those things won't happen.
On a personal note, here is what we did today: Nicholas had a fun day going outside to what we are calling our "special spot". It was a bit chili, so we didn't stay out long. But we when we came in, Stacey was here bearing gifts for Nicholas and Chilpoltle for me. Best of all, Stacey brought Funyuns! Nicholas is obsessing over them - even turning down chocolate for funyuns! This is a result of the steriod chemo he is receiving twice a day. It makes them crave the salt. Otherwise, Nicholas really isn't eating - even turning his nose up at his favorite ice cream and sprinkles. We both enjoyed her visit and it was so sad when she had to leave. Nicholas kept telling her to "stay, stay". When the elevator doors closed, we both could have cried. But while she was here they played ball and had a little picnic together.

We no sooner got back to our room When Marci, Marshall, Jordan and Victoria came to visit.

They came with cupcakes and Nicholas enjoyed watching Jordan stuff a whole one into his mouth (they were mini by the way). He wants to try it. But he had the most fun with Marshall as you can see in the video below.

All in all it was a fun day with a large dose of home. Just what we needed to begin our second week.

Thanks to everyone for the daily emails, thoughts and prayers. You are truly a gift to us and it means the world to us.

Wednesday September 24, 2008

We finally made it outside today. It is a beautiful Fall day in DC, so I was not going to miss this opportunity to get outside with Nicholas. It is important for him to do some of the things he is used to doing. Our original intention was to attend an event at the entrance of the Cancer Center where Hyndai (sp?) was presenting Nicholas's doctor with a huge grant for her clinic and Hope For Henry Foundation. On the way out we were stopped by the nurse and told not to come as one of the other children attending the event was sick and they didn't want to chance Nicholas being infected.

But, we were dressed and ready to roll, so we decided to get outside anyway. Nicholas even agreed to wear his mask, so I new he was ready too. Our first stop was the snack machine in the basement (snacks are all he is interested in eating) and when he got back in his stroller I noticed blood filling up in his central line. Freaked out, I bee-lined it back to our room, where the nurses told me this is fine and it will sometimes do that. I guess where I picked him up so he could put the money in the machine, it forced some blood out of the valve. Won't do that again!

Assured, we went out to the front of the building and found a crane statue to admire. Nicholas wanted to take some pictures, so we did. We then found a quiet area right in the front of the main building with some tables, so we sat there and had a little snack and climbed on the benches and watched the cars and buses go by. Nicholas found some ants to terrorize, but to him this was great fun.

We stayed out for about an hour and hope to get back out later this afternoon. When we got back, we were told that there had been a miscommunication and that they were expecting Nicholas at the Hyndai event, but by then it was too late to participate. No problem, we had our own fun.

Nicholas just finished receiving some more platelets and is taking a nap in the recliner chair. I think he is avoids his crib in the day thinking that he will just stay up, because he knows that when he sleeps they come to do something to him - mostly just vitals, but he really doesn't want to do that anymore either. He is getting better with that though too.

Tuesday September 23, 2008

No big change today - blood pressure is still a bit high, but may be because he is fighting having it done and is stressed when he sees anyone come in the door. His blood sugar came back high today, so they had to poke him in his foot at 6AM to make sure he wasn't going into a diabetic shock. Fortunately, his blood was fine and the high results were due to using the line where he gets his sugar saline fluid. They did and ultrasound on his foot today as it was irrited by something before we even came here. It just wasn't getting any better. They did not find anything in it, so now they are looking into what that could be. They say this is totaly unrelated to the Leukemia, but want to get it fixed while he is under anesthesia on Friday during his second bone marrow byopsy.

The next big day we have is the following friday where we will get additional results from the first bone marrow byopsy and tests will be run to determine whether or not he has met certain markers showing a true response to treatment.

The lack of sleep is starting to catch up with us, but I think I say that gratefully. Nicholas is still full of energy and wanting to go go go all day. Any naps he tries to take are interuppted and our days run from about 6AM - 11PM - non-stop. He is enjoying entertaining the staff and has gotten so much new stuff that he may confuse this with Christmas - minus all the other stuff he has to tolerate. We are basically staying her to keep him away from infection. I look forward to just coming, getting the meds, and getting back home. It will be three times per week, but mentally we'll be in a better place than staying with a tethered monkey in a 10 x 10 space.

Monday September 22, 2008

High blood pressure

Sunday September 21, 2008

Just hanging out

Saturday September 20, 2008

Poolesville day. Zach and Hailey come for their first visit

Friday September 19, 2008

Nicholas actually had his surgery this morning for the installation of his central line (the valves through which he will be getting his chemo and blood drawn) and a spinal tap to determine whether or not the cancer was surrounding his brain (common with Leukemia) GOOD NEWS!! No cancer near his brain and therefore, he will not need radiation. He came out of the anesthesia a bit cranky and bloated, but has since been happy and singing. He has learned that when he sees the rubber gloves come on, something not fun is about to happen and is starting to resist even just being examined.
He was given something to relieve the extra liquid he is retaining, but will soon get him back on the fluids as being hydrated is a critical part of getting better. As the chemo breaks down all of the white blood cells, the excess can be trapped in the kidney or liver. Not being hydrated enough will cause kidney problems and require dialysis.
He is currently receiving another blood transfusion and will get some differant chemoin an hour or so. He wants to remove his central line, but hopefully he will get used to it as it is a permanent fixture until he is in remission! Keeping this in him and clean will be one of the toughest jobs. It can't get wet and needs to be flushed out and and re-bandaged every day.
He looks very smollen in the eyes from all this extra liquid, so he looks a little sad, but he is acting basically like the happy kids he usually is. We know all the lines to Toy Story now as we have seen it nonstop since we began this ordeal. He does keep reminding us that he is done and ready to go home. That part is hard to hear. But, they have popsicles at your disposal and an ice machine, so that helps distract him.
We have just moved to a new room and arranged it to more suit our needs. Since we have to be here for a long time, we need to make it work. We are in room C5209.
Thank you for all your prayers. They seem to be helping and make us feel better just knowing they are happening.

Thursday September 18, 2008

Nicholas has a busy 24 hours ahead of him. He will will be getting platelets tomorrow before having his surgery at 9:50. This is when they will be inserting the central line to his heart and doing a spinal tap to see if the cancer is near his brain. While he is out, they will also be giving him a chemo treatment into his spine. Right now, there is big concern about germs and he has to wear a mask just to go into the hallway. He needs to stay away from anything that could compromise his health and recovery. Which means no fresh fruit,no fresh veggies,no flowers, no yogurt.. anything that could send him back a step. He is tired of being poked and prodded and wants to come home now but Donna said that the hospital has people there to entertain the kids as their immune systems start to improve.
As was mentioned yesterday, Nicholas has been diagnosed with ALL Type precurser-B. A type of leukemia (blood cancer) in which too many B-cell lymphoblasts (immature white blood cells) are found in the blood and bone marrow. It is the most common type of acute lymphoblastic leukemia (ALL). Also called precursor B-lymphoblastic leukemia and B-cell acute lymphocytic leukemia. This type of Leukemia is the most easily and successfully treated form of childhood Leukemia. But will require Nicholas to stay in the hospital for 4-6 weeks mostly to avoid any type of infection. After his in-patient stay, he will be required to make intermittent hopsital stays over the next 3 years and take a large amount of drugs.
It was a fortunate occurance that Donna had brought Nicholas' bruising issue to the attention of his Dr.s this "early" Had they waited a week or so more, Nicholas would have become extremely ill.

Wednesday September 17, 2008

Today we found out that Nicholas has Leukemia. It came as a shock to all of us. The day before we had taken him in for routine blood work and by the afternoon we are residents of the Lombardi Comprehensive Cancer Center at Georgetown University Hospital.

Nicholas had undergone some tests because we noticed that he was easily bruising. To all of our surprise, the tests confirmed that Nicholas has Leukemia. Because his platelets were so low it was advised that we take him directly to the hospital to begin more testing. He was immediately taken to Georgetown. We are trying to absorb all of this new information and understand what is ahead of us. Other than being poked and prodded yesterday Nicholas is in a good mood, laughing and playing as if nothing was wrong. Hailey and Zach are in school and are keeping up their normal routine with Rich's parents staying with them at the house.