Induction Test Results

We'll write more a little later today regarding Carson's latest antics. But on with the latest news. The tests results are IN and we couldn't have asked for anything better. It is official....

• Carson's bone marrow continues to show no leukemia blasts present
• The Minimum Residual Disease Test came back stating that Carson had less than 0.1% leukemia cells present in the bone marrow. They can only measure as small as 0.1% - therefore, they assign a value of 0% as the final result to this test! If there is any little microscopic amount of leukemia left in the bone marrow, it is too small to measure.
  
• The MRD result means Carson is a "Rapid Early Responder" and he is now considered an Intermediate Risk.

Thank you God! Go Carson! Go Chemo!

So, what do we do next? We continue on to the next phases of treatment. For those with Intermediate and Low Risk designations, there are two arms of treatment in the study. The main difference between them is whether you receive a drug called Methotrexate in several big high doses, or whether you receive smaller doses of the drug more frequently. Carson has been assigned to the High Dose Methotrexate arm. This will require several 3-4 day stays in the hospital, but it will not occur until later in his treatment.

For now, Carson enter the Consolidation phase of treatment where he'll be receiving spinal chemo every week for the next 56 days. He'll also receive a few shots like the ones he had earlier in his treatment, more oral medications, plus a new cocktail of drugs to be given through the IV at various points.

We are extremely encouraged by the latest news, but now we're also scared as we move on to the next unknown. So many questions are crowding my mind, it is hard to enjoy the good news for very long. How will the next round of treatment go? How intense will the side effects be? Will we still have such wonderful test results? I wish this drama in which we find ourselves could be over at the end of Induction. "That's it, good test results, please collect your all clear certificate and proceed with your lives". If only it were that simple.

I say all this to ask again. Please keep our little guy in your daily prayers. His road is long and will continue to be hard at times. I am weary just thinking about it, but I know we'll all have the strength when we need it. We have the prayer support of our friends and family and a strong God on whom to lean.

Thank you God! Go Carson! Go Chemo!

-Jennifer

Great News

Day 17 of 1,278

So, the great news...and I mean GREAT news...is Carson's bone marrow test came back and there was no leukemia!! Nothin'. Nada. Zilch. Niente!

Can you say miracle??

Just to put things into perspective - at diagnosis the leukemia in Carson's bone marrow was at 89%. This pushed his white blood cell count (which was mostly cancerous leukemia cells) to 240k...WAY over the normal 5 - 10k. At day 9, after the first week of chemo, he was at 7%. Now, at day 16...he's clear! Now THAT'S what I'm talking about when I say we are taking the fight to the leukemia. Sweeeeeet!

I decided to make an appearance at work this afternoon. Jennifer called shortly after I got there with the great news. She was so happy she was crying...which is totally understandable...but she totally scared the pants off of me!

So, what does this all mean? It means that Carson is responding extremely well to the therapy. This particular bone marrow test is a milestone on the treatment road map and puts Carson closer to being categorized as a Rapid Early Responder (RER). Although the longer term treatment pretty much remains the same, we feel a lot better with positive results up front. It's a good indicator...and we'll take it.

Carson and fellow gang member Nils put on a show of force to demonstrate they are still in control of the cul-de-sac.

Although he was waited on hand and foot by a wonderful staff at the hospital, Carson has perked up considerably at home. He is back in his own room, his own bed, and has every conceivable toy at his disposal. He is sleeping better and is more active when he's awake. This evening he even wanted to take a spin on his "hog" (otherwise known as a tricycle among normal children). We expected it would be a short ride...and it was...but he enjoyed it. It was just like old times.

Tomorrow we are making our first visit to the outpatient clinic for blood work.

We still have a way to go. Please keep up the prayers. Carson is very susceptible to infection and we have more chemo ahead of us. The next bone marrow test is two weeks away.

Paul.

Count Your Blessings

Here I go again with hymns from childhood:

Count your blessings, name them one by one
Count your blessings see what God has done
Count your blessings....name them one by one
Count your many blessings see what God has done.

Yesterday, I was supposed to be watering the back yard, but was considering busting out crying instead. Carson had been feeling lethargic all morning, he didn't have much of an appetite, and we had not received the final results of the bone marrow test. I was scared. This hymn popped into my head and I began to realize I had so many things to be thankful for...I could face what came next.

As it turned out, God gave us more blessings. Let me count them one by one.......

1. On the medical front Carson's bone marrow test on Monday (prior to his second chemo treatment) was extremely encouraging. The doctor's have even said "AMAZING". Only 7% of his bone marrow is now leukemia. This is down from 89% leukemia on Saturday, July 11. We have dropped 82% after only one chemo treatment!

2. Blood drawn about 12 hours after the latest chemo round showed ZERO leukemic cells spilling over into the bloodstream. This is a great sign.....no leukemia in the blood means the bone marrow has slowed production of those cells.

3. Carson's energy was back today. Given a boost by the fact that he no longer has to be hooked up to "Stretch", the IV bag holder, Carson was all over the ward this morning. He raced around the rooms, he raced to the helicopter viewing area, he played in the playroom and did laps around the gazebo on the Big Wheel at the outdoor play area.

4. The appetite is back again. This is a blessing, but sometimes you wonder about that when you are asking the kitchen to make eggs for your child at 9:00 at night!

5. We have wonderful friends and a wonderful church family. Thank you for all the visits over these past few weeks! In just the last two days, we've had visits from seven different sets of people - with more scheduled for tomorrow. We've received tons of wonderful emails, encouraging cards and meals at home and at the hospital. Those comments on the blog? They are really keeping us going. And, finally, do I need to mention all the prayer lists where Carson's name appears because a caring friend or family member has put it there? It is absolutely overwhelming.

6. We have wonderful family! My crying episode yesterday was made by possible by Grandma - she stays with Carson while he takes a nap, which means she spends the ENTIRE day at the hospital. The fact that we can come home and cry is indeed a blessing. We get it out of our system, and can then be strong for Carson again. Thanks Grandma! And thanks to all our family for all the help not mentioned here...... (it would take up too much space!)

And with that, I'll close for today. I feel ready to fight the fight again tomorrow. I know we have a long road ahead, I know I'll need to take it one day at a time, but counting my blessings has lightened my load for the time being. I'll take those blessings, I'll embrace them, I'll thank God for them!
-Jennifer

How did we get here?

Day 10 of 1,278

Medical News:

We received word back on the bone marrow and spinal fluid tests from yesterday. Like last week, the spinal fluid is NEGATIVE for leukemia. This means he won't have to have another spinal test next week. His bone marrow came back with a 7% blasts (leukemia cells). So, we're not in remission...there are a few stragglers out there. But, this is a drastic improvement over last week. This is all good news.

Carson is somewhat tired today, but still doing super overall. We will probably be here in the hospital at least through the next round of tests and chemo - scheduled for Monday. Our hope is that Carson is in remission by the time they do bone marrow tests next week. Please pray the chemo continues to do its job and kill off those nasty leukemia cells.

Thanks to everyone for the continued love and support!!


How did we get here?

Now, we've been asked dozens of times about the events that lead up to getting here. Just how did we end up in the hospital with a diagnosis of leukemia?

Well...for a week or two leading up to July 10th we had noticed Carson seeming not quite himself. He wasn't running a fever or showing any other signs of illness. He just seemed to tire more quickly and act crabby. Carson had started swimming lessons and was playing hard with his friends. But none of this seemed out of the ordinary. We are talking about an active 3 year old.

Around the first of July we noticed what looked like a rash or sunburn on the back of his neck. If you got really close, it looked like a bunch of tiny red dots on his skin. But it was just around the back of his neck and upper shoulder area.Hmmm ...we had just started swimming so it could be a number of things. Maybe it was the a reaction to the sunscreen? (Not likely.) Maybe it was parent operator error and we just didn't apply the sunscreen evenly? A weird looking sunburn? That sounded the best.

A few days later we noticed some bumps on the back of his neck. And when I say bumps...not like those associated with a rash. Something deeper under the skin. He was looking like he was putting on a little weight. But this is something 3 year-olds do from time to time when they have a growth spurt, right? He was sleeping a little more and putting on weight. Are the bumps part of a growth spurt? A few days later we noticed the bumps were still there and talked about taking him to the doctor. What would we say to the doctor? He seems tired and not himself? We didn't want to be the those overreacting parents...so we waited.

On July 9th we again noticed the bumps on his neck - they were still there. What the heck is going on? Things like this are supposed to go away after a couple of days, right? They aren't supposed to still be there.

Carson was still acting crabby. He didn't feel warm to the touch, but Jennifer decided to take his temperature anyway. Of course she decided on the under arm thermometer...which I NEVER would have chosen. Call me old-fashioned. Under arm readings never seem to be consistent. Well, thankfully she did. When she raised his arm she found a huge bulge just under his armpit.

It was his lymph nodes. Under his arm. The back of his neck. They were swollen all over.

Fast forward 24 hours and we were in the hospital hooked up to all kinds of tubes and monitors. The rash/sunburn on the back of his neck was caused by low platelets. Small capillaries in his skin were bursting and couldn't clot. His lymph nodes, liver, and spleen were swollen beyond belief, trying to filter out the leukemic white blood cells which were flooding his bloodstream.

Even though the doctors speculate that Carson had only been sick for a few of weeks, he was in really bad shape. His leukemia is aggressive.

Is that a football neck you have going on, or is that leukemia? Carson showing off new swim goggles on June 27th, two weeks before diagnosis.

Then the fear hits. No matter how many encouraging stories you hear, you are still scared. This isn't Vegas. When your child's life on the line you don't want to hear about the odds. And then the guilt sets in. What were we thinking putting off taking him to the doctor? Why us? Did I do something wrong? Why couldn't it be me instead of him? I'd switch places in a heartbeat.

I know there's a reason for everything. I just wish I could figure out what that reason was!

Paul.

Motormouth is Back

As our staff writer Francesca pointed out in this morning's report, Carson perked up considerably today. He started off a little groggy, but the steroids started to kick in by late morning and got him going.

One of the side effects of steroids is increased hunger - particularly strong cravings for sweets. Knowing this, of course, my next question is: Are the nurses slipping the rest of us steroids, too?? At one point after lunch Carson looked over and out of the blue yelled out, "I WANT A CUPCAKE!!!" We haven't had a cupcake in ages, so we're not sure where the heck that idea came from. Nevertheless, it got me thinking about cupcakes, too.

Fueling up on Frosted Flakes...make it a double!

This afternoon Jennifer and Francesca went home to take care of a few things - namely to switch out DVDs. While they were away Carson woke up from his nap and his activity switch was on FULL BLAST. Within minutes we were mobile - on the blue and yellow race car doing laps around the oncology ward. The poor lady trying to collect the dirty lunch trays...we must have nearly run her over 10 times. (Sorry!)

We made several trips to the helicopter bridge and the outdoor play yard. Carson rode the big wheel around the play yard until the battery on his IV drip monitor died. Fortunately the nurses did not get upset. Back in the room...and back on a/c power...Carson was unrelenting. He plowed through his mac-n-cheese and a dinner roll like he hadn't eaten in days. Which is all basically true...he hasn't eaten much for the past week, really.

And did I mention the motormouth? It's back. He was talking nonstop - which is exactly what he does when he's feeling good. He seemed to feel better today than he has in a couple of weeks.

Future yard maintenance superhero. The newly arrived chainsaw and goggles are liberated from their toys-r-us box and prominently put on display for all to see.

In medical news, here's where we stand 72 hours after diagnosis:

• The noon blood tests today came back with a white blood cell count of 14,900, 47 % of which is leukemia. 24 hours earlier, a few hours before the chemo treatment, he had a white blood cell count of 177,000, 86% of which was leukemia. This is a huge drop and made the doctors VERY happy...and I like it when they are happy. Pray this continues.
  

• A slight correction to the first post on how long we will be in the hospital. The "best case scenario" is 7 - 10 days. Usually it's more like 20 - 30. It's really hard to say because it all depends on how well Carson is doing. His immune system is shot. Little did we know he probably hasn't had any normal white blood cells in his body for the last couple of weeks. Infections and fevers are common side effects during the treatment. Please pray we these side effects will be few and far between.
  

• So far Carson has been able to tolerate all the different medications...and we pray it stays that way. Even the nurses marvel at how well Carson takes the incredibly yucky oral medications. (I know I would not be nearly as cooperative!) As anticipated, Carson's hemoglobin and platelet levels have dropped. Sometime in the next 24 hours he will probably require a transfusion to boost those numbers.
  

Please keep the prayers coming. We had a great day today, but it's a long, long road ahead!

And if you are wondering if we gave in and got Carson a cupcake, the answer is NO. What kind of parents do you think we are? We got him some Skittles, instead.

Paul.

Monday morning

Carson slept really well last night, but is still very tired. He did want to leave his hospital bed though, so he is on the fold out chair dozing in and out as he watches Curious George and Beethoven.

The midnight labs are back and Carson's white blood cell count has plummeted to 27,000! Since Friday the numbers have fallen from over 200,000. It is good news. We are incredibly grateful that God continues to answer one prayer at a time.

Speaking of prayer, many of you have asked for specific things for which to pray. Here is another. On or about Thursday, as part of his chemo, Carson will have a shot to which leukemia patients can have a severe allergic reaction. We are praying for no reaction. We want to stay with standard (we read "best") protocol.

We'll update more later. We have had a busy morning - Paul took Francesca to Vacation Bible School. The residents have been by the room to discuss Carson's treatment, we've met a new hematologist oncologist and we're going to be giving a few more meds any minute now!

Jennifer and Paul

Night Moves

Carson had a fairly restful night last night. They were able to draw blood from his port twice - no pain and no waking him up - Yea! The first labs came back looking very good to start chemo, but we are still waiting to hear the results of the 6 AM test.

I signed all the paperwork to let them proceed with the chemo as soon as they're ready. Initial and date every page, sign on the dotted line at the end. "More paperwork than buying a house" is the way the doctor put it.

It is now 9 AM and Carson is up, has eaten two graham crackers and half a banana. He said right away that his throat is feeling better (it was sore yesterday from the tube they inserted during his surgery), but he is low on energy as you might imagine. He's still receiving a small amount of oxygen, but I'm told once his body gets over the anesthesia he'll be able to go without it.

.......15 minutes later.......Doctor just came in with some more paperwork, but after that he told us that Carson's spinal tap test was negative!!!! No leukemia cells in the spinal fluid! Thank you God for yet another prayer answered.

And thank you everyone for your continued prayers and offers of help. We are so grateful.

Jennifer

The Verdict

Do you ever have one of those days where you just can't remember anything that was thrown at you? I feel like we are in a one-day crash course of Advanced Studies in Leukemia. Information is coming at us from all directions, critical decisions must be made, and I still can't find my way from the cafeteria back to our room. (That's no joke!) This is by no means meant to mock or disrespect the work of the doctors and nurses who are doing amazing work that most folks like me could never handle. It is just the nature of the beast. There is a three year-old who is suffering, it's a complicated issue, and he's not going to get any better until we take some action.

I'm sitting here in the hospital room with Carson sawing logs only a few feet from me and I'm still processing everything that's happened today. Let me summarize events of the last 24 hrs:

• After I left last night Carson endured three more blood draws. These were all excruciatingly painful, his veins collapsing frequently, and the technician (aka vampire!) digging to find enough blood for the numerous tests.
  

• He received a platelet transfusion and a treatment for uric acid buildup. Don't ask me the name of the medication used to treat for the uric acid buildup...but nausea and vomiting are frequent side-effects. The important piece of information to take away here is that NEITHER of these treatments bothered him and BOTH were successful in accomplishing what they were meant to do. (One prayer answered.)

• The results of the type of leukemia came back - he has the A-L-L type! (Two prayers answered.) Within the A-L-L category, there are two subtypes - a B cell version and a T cell version. The B cell version is more common and the easiest of all to treat. The T cell version is slightly less common and somewhat tougher to treat. Carson has the T cell version. (Hey, why make this easy?)
  

• With the type of leukemia nailed down, we were able to proceed with surgery to insert a center line port. This will allow the nurses to draw blood and administer chemo (or other IV treatments), without having to dig for veins. Pretty cool, huh? I sure think so. During the surgery the oncologist took bone marrow samples from Carson's hip and fluid from his spine. While he was in there, he also treated the spinal area with chemo. Apparently chemo administered through the bloodstream doesn't come into contact with spinal fluid, so this was like an opportunity for one-stop shopping. The surgery only lasted about 45 minutes and went very smoothly. (Three prayers answered!) Carson had a few problems coming out of the anesthesia, but after a while was able to pack away a banana and some ginger ale.
  

So where do we go from here? Well, the typical treatment for A-L-L luekemia will last approximately 3 1/2 years. It will start out with a month of intense chemotherapy called induction. After that, they will do more tests (bone marrow, spinal fluid, etc) and decide on which therapy regimine makes the most sense. Given Carson's super high white blood cell count, they are viewing this as an aggressive cancer and plan to respond with aggressive therapy.

If we follow the typical treatment path (please pray that we do!), we will most likely be in the hospital for 7 - 10 days. After that, the treatments will be outpatient and the chemo will be in lower doses.

Day 1 of the 30 day "induction" period was supposed to start today...well, actually tonight. However, with the anesthesia taking longer to wear off, looks like we will be starting tomorrow.

I realize this is long and contains a lot of info...if you don't read anything else, I hope you see this: We need your continued prayers! We still have a long, long way to go.

Thanks!

Paul

p.s. Just want to put a plug in for the doctors and nurses here at Innova Fairfax...I realize we've only been here for a little more than 24 hours (which I can hardly believe!), but the staff here has been absolutely amazing! They are very much focused on Carson - curing him and comforting him. And that's our top priority.

Day Zero

We never had given much thought about starting a blog...until today. Sending out email after email on the on the adventures of our family is sooo passé. Isn't there a better way to do things? Enter the blog.

Friday - yesterday - was a big day for us...and not in a good way. Carson, our three-year-old son, hadn't been acting quite the same, so we took him to the doctor. After a quick and polite exam at the doctor's office, however, they sent us to the ER. Um...no quick fix, like usual? Maybe some antibiotics?

At the ER we were admitted rather quickly - thanks to a call ahead by our physician. The ER staff took what seemed like a gazillion blood samples (we really have that much stuff in us?) and after a couple of hours of lab work, we were told we were dealing with leukemia.

Jennifer and Francesca, our 11 year-old daughter, were all there together. It was like a ton of bricks hit us all. I'm not sure how long it was before we could breathe again. Despite this being completely devastating news and going through some nasty blood draws, Carson was the one who was holding up strong.

Carson enjoying the 2009 Easter egg hunt.

The staff in the ER were sympathetic and helpful. After that things started to move quickly. We were introduced to a hematology oncologist and inundated with information on leukemia. (I couldn't even spell leukemia!) I walked away with this: There are two forms of acute leukemia - ALL and AML, and ALL is generally easier to treat.

First things first, we had to address Carson's high white blood cell count and boost his platelets. He received a platelet transfusion during the night as well as fluids to flush his system from the remains of the many dead white blood cells. Once that is done, he will undergo surgery for a center line port - a surgically installed port to draw blood and administer fluids (including chemo).

Needless to say, we will be spending most all of our time at Fairfax hospital for the foreseeable future. As for now, please pray for the "easier" of the two forms of leukemia to treat...ALL...and for comfort for Carson!

Thanks to all of our chaotic friends and family out there!

Paul.