Week 2 Update

Two weeks...we have been here for more than two weeks. We have seen more Disney Channel and Cartoon Network than should be legally allowed.

Now that Alex is starting to feel better, we are working with the school program here, and did some "math games" this morning. We have more homework scheduled for after lunch.

The morning x-ray looked great, and the surgeons ordered the chest tube "water sealed". At 4pm, another x-ray is scheduled, and if that one looks good, the surgeons will take out the chest tube, and Alex will start to feel much better.

The nurses are a bit concerned about Alex's wet cough. We are encouraging "big coughs", to clear his lungs, but since it hurts to cough, it is an uphill battle.

Alex's ANC was only 26 this morning. Down from 100 yesterday. However, we do see some Monocytes starting to develop, which are precursor cells, so hopefully Alex's ANC will start to recover soon. However, we do have chemo tomorrow, so who knows?

Pain

We are able to control Alex's pain with Oxycodon and Morphine. We had hoped that today the doctors would remove his chest tube. Unfortunately, his white cells started to climb, which meant that he had inflamation which delays the tube removal. After a chest x-ray this morning showed that Alex's chest cavity was clear, the surgeons ordered his chest tube sealed. However, by the afternoon, Alex was hurting, and a second x-ray confirmed some build up in his chest cavity. So, the doctors ordered his chest tube back to suction.

If we get behind on the pain medication, our brave Alex starts to whimper from the pain. Breathing still hurts, as we try to expand his lungs by having him blow bubbles. Today is better than yesterday, which was better than the day before. We are hopeful that tomorrow's chest x-ray will allow the chest tube to be sealed, and that a second x-ray will confirm that he is stable. Once that happens, the doctors will remove the chest tube. I have been told it is like taking out an IV needle. Alex is nervous about it, so anti-anxiety medication will be administered well before hand.

Tomorrow is Tuesday, and with chemo and a bone marrow aspiration on Wednesday, I'm not sure when we will get to go home.

We have been here two weeks...I just want us all to go home.

Gurgle and Hiss

The constant sounds of the gurgling chest tube and hissing oxygen are only interrupted by the hurried noise of the nursing staff checking Alex's vital signs.

The Little Green Button

Alex's IV pole is getting full. The saline drip, the antibiotics, and the anti-fungal medications have been joined by the morphine contraption with a green button. The morphine in fact, is not even enough. The doctors have him on oxycodon every 4 hours too.

Every 10 minutes, this contraption allows Alex to have a dose of morphine, with one condition. The nurse has to push the glowing green button. When Alex is hurting, we have to call the front desk (as we are in isolation), have the front desk find his nurse, have the nurse "gown up", have the nurse record the dose, and THEN push the green button.

This maneuver can take upwards of 10 minutes, which seem like hours to my little guy. Those of you who know Alex personally, know he doesn't like to take medication, and is very stoic, with a high pain threshold. The fact that he is asking for morphine every 15 minutes or so, tells you how uncomfortable he is.

I feel so helpless. The green button is right there...I could push it to give him the relief from his pain, but I'm "not authorized" to push the button. I don't see a retina scanner, or fingerprint pad on this green button, yet to push it would be against hospital policy. It glows at me, reminding me that I cannot take the pain away from him. Mommy kisses aren't enough this time.

This Sucks!

Alex: My back hurts.
Me: I know Dude, it's probably the tube in your side.

Alex: It hurts!
Me: I'm sorry.  We just pushed the morphine button.  That should help.

Alex: It hurts when I breath!
Me: It's going to hurt to breath for a little while.

Alex: For a couple of days?
Me: Yes, it's going to hurt to breath for a couple of days.

Alex: This sucks!
Me: Yes it does Dude.  Yes it does.

(Posted By Eric)

After Surgery

We waited an additional 4 hours, in 1/2 hour increments for Alex to have his surgery. We walked with him down to the operating room, and then kissed him good bye.

Then, Eric and I walked hand in hand down the hallway, and started our wait. At 6:45, the nurses called us back to see our brave boy.

I was not expecting the "gurgling" of the chest tube machine, or the amount of red liquid in the tube. I don't know what I thought it would look like, but it is quite, big, and loud. It is a "sealed" system, so that water pumps in, and back out of his chest, to flush out the "stuff" left over from surgery.

The nurses are currently hooking up a morphine machine, so that Alex can request a dose every 10 minutes, as needed.

The doctors said they removed a hard round mass from his lung (about the size of a marble), and that the rest of his lung looked great.

Since it is a Friday night, of a three day weekend, we don't expect to get results back until Tuesday or Wednesday.

I am heading home to spend the evening, and tomorrow with Tessa. Eric will stay here with Alex, and make sure that he is as comfortable as he can be with a new incision, and tube coming out of his right side.

Thanks for all the love and support. We will keep you all updated on his condition.

Surgery

After four hours of delays, Eric and I gave Alex a kiss, and watched him get wheeled into surgery...now we wait...

Dear Tessa-Lynn

Dear Tessa-Lynn,

This morning, when your Daddy came into the hospital room, he told me that you were crying for me when you woke up. He told me that you said "I miss Mommy".

I want you to know that I miss you too, sweet-heart.

Today, at 12:30, your brother will be wheeled into an operating room to remove a piece of his lung that shouldn't be there. Mommy and Daddy are worried about this surgery, and need to be here for your brother. We want him to be able to come home as soon as possible so we can be a family together again. He misses you, and wants to see you soon too.

Tonight, I will come home and spend the evening with you. Tomorrow, the plan is to spend the day with you. What would you like to do? We could try to plant the garden (in between the rain showers), we could play in your room, we could read stories, we could go for a walk in the rain! Your choice, sweetie...whatever you want to do.

I want you to know how much Daddy and I love you, and how it hurts our hearts not to have you with us all the time. I know you are mad, you have every right to be. Cancer came back, and threw our lives into chaos again. You don't deserve that. None of us do.

I'm so proud of you! You are almost done with your first year of preschool. Your teacher loves you, and is very pleased with your progress this year. You are one smart cookie!

I can't wait to come home tonight, and give you a big hug, and see that amazing smile of yours! I can't wait to hear "Mommy!", and laugh with your contagious giggles!

Your Grandparents have been such a wonderful support - and so enjoy your feisty spirit! You bring joy to their lives, and we are so grateful that they are here to take such good care of you.

I'll see you tonight - save a big smile for me!

Love, Mommy

Quick Update

Surgery is scheduled for Friday. I will give a larger update this afternoon...

Decorating

Since we will be here for probably another week, we might as well decorate!

Thank you to everyone who has sent cards, pictures, love, and well wishes our way. Alex is currently having an awesome time with his new Chemo Pal, Reid!

We are working on gathering all the postcards, notes, and cards from all of you amazing Warriors - we want to put a Google Map on the blog here with pins from all the places Alex has received mail. We have received mail from Ethiopia, Australia, Germany, New Zealand, Spain, England, and others - stay tuned to see a world view of all the Warriors 4 Alex!

Change of Plans

The surgeons will be invading Alex's lung on Thursday. Chemo will happen tomorrow as originally planned.

Other news...Alex DOES have C.Diff, so we will be in isolation for the duration of our stay, or 10 days, whichever comes first.

I am home with my sweet Tessa, while Eric has some time with Alex tonight. Tomorrow, we will meet with the surgeons, and have a better idea of the scope of the surgery.

Just to reassure everyone, the doctors believe this is a fungal mass...not a cancerous tumor. Normally, a four to five week IV anti-fungal medication would be enough, however with Alex going towards transplant, the doctors want to make sure they get all types of infection out of his body.

We will know more about the risks vs. benefit of this surgery tomorrow. As for tonight, I will sleep in the bedroom next to our daughter, wishing we could all be together... Good night all.

Surgery

The doctors just came in, and told me that they will be *removing* the mass in his upper right lung tomorrow.

It isn't enough that Alex has to endure cancer again, but now, they have to do surgery on his lung, by going through his chest cavity to remove a fungal mass. He will have a chest tube, and take 4-5 days to recover.

Since his platelets are so low, they will be continuing to transfuse while he is recovering, so that he can heal properly.

Chemo will be administered on Thursday instead of tomorrow.

The surgeons will be here in a while to discuss the details of the surgery. I will let you know more, when I do.

Fungal Mass

The results from the CT scan are in. Alex has a fungal mass in one of his lungs. The treatment is the anti-fungal IV medication he is currently on. The treatment is 4-5 weeks long. Thankfully, we will not have to spend all of that time in the hospital. We get to treat him at home with IV medication. I am interested to see how our three-year old deals with this.

However, just because they know what it is, does not mean we get to go home. He has to be fever-free for 48 hours, and his ANC has to be trending up. Since he gets Chemo tomorrow, that isn't going to be happening for at least 4-5 days.

We are still in isolation, until the doctors can rule out C-Difficile. Hopefully, with the volume of Cheerios he ate this morning, two "samples" of his stool will be easy to acquire.

Getting Alex motivated to work on homework, is getting harder each day. He is angry he is here, and depressed, as are we. All he wants to do is sleep and escape this room, as do we...

More Transfusions and Low Counts

Alex started to have a nose bleed last night, so the doctors ordered him more platelets overnight. This morning, his Hemoglobin was only 7, so they are ordering up a transfusion for that too.

The doctors came in, and not all the results are back from the CT scan yet, but there was nothing in his sinus cavity. As soon as the abdomen is done, they will let me know.

Alex's ANC halved overnight to only 16 - wrong direction for going home. I have a feeling we will be here for at least another 4-5 days, since he gets Chemo tomorrow.

The doctors are also going to check his stool, to see if something isn't hiding out in his colon, that they can treat, and eliminate the fever. They told me what it was, and I promptly forgot. In the meantime, we need to be in isolation until he poops...prunes anyone?!?

CT Scan and the TARDIS

This is what the machine Alex was put in yesterday looks like. I'm sure many of you have seen one on TV shows, but it is very different sitting in the room with one.

Alex had to drink about 10 ounces of liquid with a "contrast" solution in it. Then, we waited, and waited, and waited. Turns out that the pediatric CT machine was not working.

We were told that the dye that they needed to inject into his blood, could damage his Port, so they needed to do an IV. Alex was not happy about this AT ALL. But, our brave boy, allowed the nurse to put on the numbing cream on his arm (his preference for an IV line), and on the top of his hand (his least favorite place for an IV). The IV nurse came in about 45 minutes later, and tried the arm site, but the needle went "through and through", and was unusable. So, Alex with a frown on his face, watched the nurse very closely, as she put the big IV needle into his hand. She was very good, and Alex didn't feel a thing.

We went down to the "classroom" here in the unit, where Alex started having an anxiety attack. He *really* wanted to make bouncy balls (science experiment), but his fear won out. We decided to come back to the room, where Eric held him close, which helped him calm down. Have I mentioned what an amazing father Eric is?

At the same time, "Chelsea's Closet" was on the floor, handing out new costumes to all the kids. Alex was too nervous to go to the volunteers to pick out a costume, so I went and got him a "knight" costume, with sword, shield, and breast plate. It was a big hit in the comfort of our hospital room.

During all of this, Alex's fever started to rise AGAIN, and his legs were hurting. The nurse gave him oxycodon, and within a few minutes, he was playing, and bouncing off the walls.

Finally, at about 4:30, Alex's transportation (a hospital bed) arrived to take him for his CT scan. Eric gave Alex a good-bye hug, and headed back to spend some time with Tessa.

Alex and I were then collected, and our chauffeur navigated the maze of hallways down to the imaging center.

With Alex's earlier anxiety, I was worried that this test would send him over the edge. The technician explained that with the delay, all the contrast solution we had Alex drink before, was no good anymore, and "here, drink these 10 oz of apple juice quickly". I put on my big "plastic" smile, and held the cup, and Alex gulped as fast as he could.

I was then instructed to put Alex on the table of the machine, gently placing his noggin in the head rest. Then, he smiled. He was enjoying this! While Alex lay still, completely exposed to the radiation, the technician sat behind very thick glass, and I sat covered in lead shielding, just out of arms reach.

With the IV hooked up, and the machine turned on, Alex looked at me, and gave me the most mischievous smile I have ever seen! When the test was over, he told me "Mom, it sounded just like the TARDIS! For those of you not familiar with that term, the TARDIS, is the time machine that Dr. Who travels in, on our family's favorite TV show: Dr. Who. Unfortunately, we did not come out of the CT scan room in an alternate reality, where Alex did not have cancer...

I walk these halls back and forth from the cafeteria (and Starbucks) in a daze. I put a smile on my face, and I'm not exactly sure why. I'm in the hospital - the children's hospital - in the oncology department. I deserve to have red swelled eyes, and puffy cheeks. I deserve to break down in the hallway, and cry hysterically while looking down at the city below us.

Maybe I put on the plastic smile, to try and convince myself that everything will be OK. That the CT scan will show a small fungal ball in his sinus that the doctors can easily treat. That the CT scan won't show anything at all, and that the fevers just go away. That a blood test will come back and the doctors will say - "we were wrong". That this nightmare is just that - and Eric and I will wake up at home with our family intact.

I could really use "The Doctor" right now, and the TARDIS to whisk us away to a time when cancer was 100% curable 100% of the time.

Guess Who Is Back?

Mr. Fever! 100.5 and climbing...

Alex drank all the contrast solution to get ready for the CT scan. The doctors also ordered an IV in his hand since the dye they inject in him can damage his Port.

He was so brave, and so scared with the IV - but watched every move the nurse made. The numbing cream did it's job, and he didn't feel a thing.

He has had a bit of anxiety today, but some Oxycodon took the edge off, and now he is comfortably watching Ghostbusters II, for the second time...

We have a science project, and homework to do after the CT scan. Tomorrow we will try and go to the classroom in the ward here, and get some semblance of a routine started.

The nurse just walked in and told us that the Pediatric CT scan is "down", and maintenance is working on it - so, we may need to get Alex to drink the contrast solution AGAIN in a while.

More Diagnostic Tests

This fever is really stumping Alex's doctors. They already have him on broad spectrum antibiotics, and nothing is growing in his blood cultures. They recently put him on a broad spectrum anti-fungal regimen, yet the fever continues to spike in the afternoon.

So, it sounds like the team of doctors is considering doing a CT scan to see if they can see if there is a different type of fungus somewhere in his body, that is not responding to the medication.

They are switching to a different anti-fungal medication, since the one he is on currently, has adverse effects with the Vincristine he will get on Wednesday.

Alex is currently still asleep. His hemoglobin continues to drop (7.4 this morning), and his platelets are following suit (19). I'm sure another transfusion of one or both of those are in the cards for today or tomorrow. His ANC is slowly rising (38), but needs to be up over 200 AND he needs to be fever-free for 48 hours before we can get out of here.

The logistics are this:

1) He has not had a fever since last night - 48 hour time has started - earliest out is Wednesday.

2) His counts are only 38 - they need to be over 200 before they release him. Since the precursor "monocyte" cells are still at zero, the likelihood of a 200 count by Wednesday is unlikely.

3) Wednesday, he gets Vincristine and Daunorubicine, which will plummet his counts back to zero. Counts start to SLOWLY rise after 4-5 days - MAYBE reaching 200 on a Tuesday evening.

4) Repeat steps 1-3 until 48 hour no-fever condition coincides with a Tuesday with a count of 200+.

So, if his body goes into high gear today, creating a ton of neutrophils (the white cell count we are looking for), AND he doesn't spike his daily temperature, we MIGHT go home on Wednesday AFTER chemo - however, we are not counting on that scenario.

I will let everyone know what we find out when the CT scan is done - *sometime* today...

The Fever Returns

101.5

Until we get this fever under control, Alex isn't going anywhere...

Fever Again

100.8

The clock starts over...we will be here through the weekend... sigh...

Family Day

Today is Family Day in our home. The anniversary of the day that Tessa-Lynn's adoption was finalized, and we became a forever family.

Today, all four of us should be smiling, laughing, hugging, and enjoying each other - together.

Instead, Eric and I are up at the hospital helping our brave boy with some nausea, while our wonderful daughter is in great hands with her equally amazing grandparents.

How dare cancer sneak back into our lives, and deny us this day...

Side Effects

A Public Service Announcement
Probable Side Effects On Parents Of A Child With Cancer:

Negative Side Effects
Post traumatic stress disorder
Nightmares
Panic attacks
Hysteria
Psychiatric assistance
Weak knees
Breathing difficulty
Dependence on "happy pills"
Blank stares
Trouble concentrating
Germ phobia
OCD tendencies
Frequent hand washing
Withdrawal from society
Insomnia
Exhaustion
Financial strain
Lack of focus
Hopelessness
Eating too much
Eating too little
False smiles
Uncontrollable crying

Positive Side Effects
Appreciation of family and friends
Indescribable Love
Hope
Courage
Strength
Resilience
Joy
Laughter

NOTE: negative and positive side effects may occur simultaneously, resulting in mass confusion, hysteria, and uncontrollable laughing and/or crying. People experiencing these symptoms may need to seek refuge in a padded room until the appropriate pharmaceutical assistance can be obtained.

68

We met with the transplant coordinator this afternoon. Out of a pool of over ten million possible donors, it looks like there are sixty eight possible matches. These represent people who have six out of an initial six genetic markers. Now the real work starts. Our coordinator will be doing additional resaearch to find how many of these sixty eight people have four other markers in common with Alex. Once they find those that are a perfect match to all ten markers, then they will weed down, using further criteria, until they have one or two good matches.

68 out of over 10,000,000 - the number is astonishing!

There are also two possible cord blood donations that are an initial six out of six match. Those will be researched, and evaluated too. The data suggests that there isn't a huge difference in survival rates between cord blood vs. marrow. So, the bottom line will be, which donation is the closest, best match for Alex.

That research will take some time. In the meantime, Alex's fever has returned. Today he had his lumbar puncture, a unit of platelets, Methotrexate, Vincristine, and Daunorubicine. He has been sleeping much of the day. We aren't sure when we will be coming home. He has to be fever free, with clear blood cultures for 48 hours, and his counts need to trend up. With his most recent temperature at 100.9, our clock for 48 hours hasn't even started yet.

The chemo is working against us going home, in that it is supressing his blood counts, so we wait and see, and wait and see...

Power Breakfast

This morning, our nurse woke me up at six so that I could run down to the cafeteria to ensure Alex would have breakfast before they "cut him off" at seven.

With the sun shining through the hospital window, I dragged myself out of bed. After throwing on some clothes, I traversed the web of hallways to the cafeteria. Not knowing what Alex would want, since he was still sleeping, I decided to get some of everthing.

Using my elbows to navigate the elevators, I returned to the room with two full trays of food. Alex looked over the eggs, sausage, bacon, hashbrowns, pancakes, buscuits, and yogurt, and decided on a sausage and egg buscuit, and pancakes. At seven on the dot, Alex told me "OK, I can't eat anymore".

I have put the trays of food away, and we have hunkered down to wait out the day.

At least the food is good...

Sigh...

Today, Alex was very tired. He slept most of the morning, and by noon, he was running a slight fever. By 3pm, he was getting close to the magic 100.4 degree number that warrants a trip to the hospital. Knowing that Alex's counts were zero on Friday, I packed a bag knowing we would most likely have to stay overnight.

With Eric's mom at the house, Tessa was in good hands. This isn't fair to Tessa either. She looses time with mom or dad, and misses her brother.

Alex had to remind me to slow down a few times on the way to the hospital. If I could get there by 4pm, we could be seen in the clinic, and not have to go to the Emergency Department. We just made it in time. The clinic was waiting for us, and had an antibiotic ready to go.

We were admitted to room 18, and we have been watching his temperature climb. At 101.9, the nurse gave him tylenol.

Blood cultures were taken, and we are waiting to see if anything grows. If the cultures are negative in the morning, they will move ahead with his chemo, and LP, which means no food after 7am, until after the procedure at 1pm. If the cultures are positive, everything is put on hold u til the infection is gone.

We ordered dinner, and Alex devoured his dinner. I was able to order enough, so that I could eat too. At least the food is good...

Tantrum

It has been a few days since I have posted here. It is hard to know what to say right now. All I want to do, is fall on the floor, kick my feet, and scream at the top of my lungs.

Alex has cancer again. Once was bad enough...but twice?!? With a combination of cancers that haven't been documented in any science journals?!? The cure caused the secondary cancer - what the hell?!?

My hands are shaking just thinking about this.

On Friday, Alex looked at me with those soulful eyes, and told me:

"Mom, I'm going to do my best not to die".

What the hell am I supposed to say to that?!? Why should a six year old have to comfort his mother?!?

I swallowed my sorrow, looked him in the eyes, and said "we'll work on that together"

B-I-N-G-O

Today, Alex had Vincristine, and Daunorubicine (the medication that most likely caused this cancer). Since we are wiping out his bone marrow, the chance of Daunorubicine doing any additional harm is far outweighed by the success rate of the drug. Alex's hemoglobin was fine, but his platelets were low enough to warrant a transfusion. So, our stay was extended into the afternoon.

While we waited in the infusion room for all the poisons to pump into Alex's body, we got to play "BINGO" - the hospital volunteers had a closed circuit TV channel, and the kids got to call in when they won and have their names announced on "TV". After the games were over, the prize cart came around and Alex got to pick out a prize.

Alex is an eating MACHINE. Today, he ate - in this order: Quarter Pounder with Cheese, four chicken McNuggets, a cheese stick, Sausage McMuffin with Egg, hash-browns, orange juice, hot dog, french-fries, a whole personal pizza, lemonade, chips & salsa, lasagna, and chips.

Our insurance stalled on approving the typing procedure which will start the ball rolling on finding a bone marrow match. Today, the pre-approval was granted. By next week we should know how hard or easy it will be to find Alex's perfect match.

If you are reading this blog, please consider becoming a bone marrow donor. You could help save a life. Please click on the "Be the Match" logo on the side of this blog, to start the process. A simple cheek swab is all they need to get you in the registry.

Tears

Alex was so brave when the nurse accessed his Port.

I on the other hand, cried silent tears at having to be here, doing this again...

It's Deja Vu All Over Again

Today, we head back up to Doerenbecher, with numbing cream on Alex's new Port. We will park at the bottom of the hill, and ride the tram up, remembering to get our parking ticket validated.

Alex has asked if he can sit in the stroller - just like he did those first few months, with his prior diagnosis.

We will walk the maze of the OHSU campus, and arrive at the clinic. We will check in, sit down, watch a movie while we wait to be called.

Once we walk through the double doors, Alex will be weighed, measured, have his blood pressure checked, and his temperature taken. The CNA will ask if anything hurts today. Alex will answer his left leg. The CNA will note it in his chart, and we will be sent to a room. The nurses will then access his Port, we will anxiously wait for the blood counts, and possibly stay for a transfusion of hemoglobin, and/or platelets. The doctor will come in, talk to us about his treatment plan. I will ask for a copy of the "road map" of his treatment. If chemo is due, we will go into the play room, and find a video game to play, and zone out for a while.

Once we finish with the clinic, we will then go to the cafeteria, eat something (it's Monday, so most likely, taco salad). After depositing our waste in either the compost, recycle, or trash bins, we will navigate the halls back to the tram, and descend to the bottom of the hill.

We will go down the elevator, to level P1 or P2, and wander to our car. As we exit, I will hand my validated ticket to the attendant, who will raise the bar, so we can exit. I will say "thank you", and we will drive home...preparing to do this again on Wednesday...

Going Home...

We got word today that Alex will be going home today (after 5pm)!

They are "topping him off" with a unit of hemoglobin before we go, so he can hopefully make it until his Monday clinic appointment without a transfusion over the weekend.

Yesterday, he received a unit of platelets, which we hope take him until Monday too.

Hi spirit is up, and his color is good. The awful bruises are fading away. We laughed a lot last night...it felt so good!

This last week was a blur - I cannot even tell you what we did from day to day. All I know, is that Alex got a whole lot of chemo, which has taken his white cell count from 90,000 (normal is 5,000- 10,000) down to 200 today. Since those remaining white blood cells are most likely leukemic, he essentially has no immune system.

We have to be so careful right now, his body can't fight off infection. Lots of hand washing, and hand sanitizer is a must. Unfortunately, we will have to screen his visitors to make sure that he isn't exposed to something that might seem mild to a healthy person, but could be disastrous for my immune-suppressed son.

This weekend, we are just going to lay low, and look at having visitors next week. This is the hard part - he is going to want to play with all his friends, and we will just have short play dates for at least 3 weeks.

Looking at the calendar, it seems that if all goes well, Alex will be able to attend the last two weeks of school (crossing fingers and toes). In the meantime, the hospital has given us a kit called "There is a monkey in my chair". The program provides a big stuffed monkey that will sit in Alex's chair at school, until he can come back. The kit also includes a disposable camera, a photo book, and journal so the kids at school can take pictures, and send them to Alex in the kit's backpack. There is also a book to read to the kids, and a teacher's guide. Alex's teacher was so excited when she saw the kit today. Alex has such a sweet class, and she knows they will really love the monkey! His classmates don't want any other kid to sit in Alex's chair, so the monkey will sit there instead. Next year, we hope to get Alex placed in a first grade classroom with many of his friends from this year. That way, they can keep the tradition of the monkey alive until Alex can come back, which will probably be January 2012.

I also wanted to say "thank you" to all of you who have taken Alex into your heart. It means so much to us, that our amazing boy is loved by so many!

When I Grow Up...

Alex: Mom, when I grow up, I want to be a rock star!

Me: Ohhh...what would you name your band?

Alex: Chemo Sucks!

Me: (((Tears)))

The Best Option

Last night was uneventful. We got to sleep, and besides helping Alex get up to use the bathroom a few times, we were able to rest.

The doctors had ordered a second Echo Cardiogram, since Alex's blood pressure had been so strange. Alex was not happy about this, since his experience on Monday with the first Echo technician was painful.

With the first Echo, we had told Alex that it was just pictures of his heart, and it wouldn't hurt. Unfortunately, the technician was focused on getting a good picture, and was pressing way to hard on Alex's ribcage. Silent tears ran down his face, as he tried to be brave, and not cry. We had to stop the procedure, and have the technician leave the room for a bit, while I lay next to him, and dried his tears.

So, when he heard that he needed a second Echo, he started getting really anxious. I told the new technician that he was apprehensive, and to be extra gentle. To her credit, she was hyper-aware of Alex's concern, and talked with him about everything she was doing. We got through the process without stoic tears.

What an amazing technology. I watched Alex's heart beating. I saw the blood flow in and out of that phenomenal muscle, as it pumped life for my son. I silently spoke to that image, trying to extract a promise that it would beat for another 90 years.

Later, our doctor came in and told us the results of the chromosome test for Alex's leukemia. It has the genetic marker, MLL, which means that this leukemia was caused by the cure for his lymphoma. Yes - the cure caused his cancer, and a bone marrow transplant is really the only way to cure him. But, this is better news than a relapse of his first cancer.

Eric and I have only one experience around bone marrow transplant. It was not a happy ending.

We know that this is the best option to cure him, and as we educate ourselves about the process, we will educate all of you too. The first step in that education came this afternoon, when we met with the bone marrow transplant coordinator. She had the nurses draw more blood so she can get Alex typed and start the search for a perfect match. It usually takes a few months to find a match, so the transplant will happen when he is both in remission, and the match is confirmed.

We are told that we may be able to go home on Friday - but our experience with the hospital tells us not to count on that until the discharge papers are in our hand.

A Very Long Night and Day

Today has been a bit of a fog...you see, I only got one and a half hours of sleep last night.

Around 10pm, Alex finally received all his chemo for the night. Soon after, the nurse started checking on him, and she noticed that his heart rate was low (under 60), and that his blood pressure range was really large (92/29). His temperature dropped to 96 degrees, and yet he complained that he was hot.

I was just standing there...there was nothing for me to do, so I crawled in bed next to Alex, and just tried to provide body heat, and comfort.

After doctors, and even the Head Nurse of the ICU came in to consult, everyone took, and wait and watch attitude. He looked a lot better than the numbers, so everyone was stumped (and still is)

About 5am, I was ready to crawl into my bed, and by 5:30am I was out, and so was Alex.

Morning came very quickly, and by 10am, Alex had seen all the doctors, had an EKG (which came back fine), and a chest X-Ray (no pneumonia, or masses). Alex was wired up and miserable about it. His vitals settled down during the morning, and he was freed from many of the wires. He also received another unit of whole blood this afternoon.

We had various visitors throughout the day, which is always nice, and the nurses agreed that while Alex was awake, they could "unplug" him from almost everything, except the saline drip. Now that we are ready for bed, they will hook him up to the machines, and monitor him all night.

More steroids today - Alex's face is starting to get really puffy again. It is so hard reliving this again - but not knowing the plan just tears me up.

We are just waiting, and waiting for the chromosome tests to determine which path we take. We are hoping to rule out a relapse, since Alex had T-cell lymphoma and now has Acute Pre-B Lymphoblastic Leukemia (Pre-B: ALL). A non-relapse would increase his odds of survival significantly.

Eric is home with our sweet daughter. I can only hope that we can all be together as a family sometime soon.

Still pinching, and hoping this is all a horrible dream...someone please wake me up.

Night Time

The sky is dark out, Eric has gone home to get some decent sleep. Alex is watching Scooby-Doo, while we wait for his first round of chemo to begin.

Two toxic poisons, both which would severally burn the skin, should it leak from his Port, will be pumped into Alex tonight. By tomorrow morning, Alex will have received: anti-nausea medicine, anti-anxiety medicine, Dexemethasone, Vincristine, Donorubicin, anti-uric acid medicine, anti-phosphorous medicine, antibiotics, whole blood, platelets, and a constant saline drip. He has also already had surgery, morphine, oxycodon, alabuterol, propofol, and other anesthesia medication.

My head is swimming, and it is hard to think clearly...I think I will go shut my eyes for a moment before the circus of chemo begins...

Port In

Alex has a cough...hell, we all do - we have had it for over 2 months...

While coming out of anesthesia, his poor body was coughing so hard, that even with his transfused platelets, he had tiny blood vessels burst in his face from the force of his cough.

The Port is in, and he is now resting comfortably, watching Scooby-Doo, and eating popcorn (his request...)

The chemo is starting in a few hours (probably between 7 and 8pm tonight). While I am anxious to get started, we are devastated at having to go down this path again...

In Surgery

We just gave Alex kisses, and watched him get wheeled into the operating room. Alex is getting his Port today.

At least I was able to keep my promise.

The Waiting Game

Alex hasn't been able to eat anything since 8am - the doctors are trying to get him scheduled for surgery to put in a Port. Everyone has been so good to us here. This feels a bit like home (not sure I like that...).

Yesterday, Alex got to play with his sister for an hour outside. It was sweet to see how much they love each other, and how happy they were to see each other.

We have been kept busy with visits with friends and family over the past two days, and that has really helped.

We are watching WAY too much TV, and trying to nap when we can - we know all too well how hard it is to sleep in a hospital.

We still don't know exactly what we are dealing with - a relapse, or an unconnected second cancer, or a secondary cancer caused by the cure for the first. We are waiting for the chromosome tests - which take a while.

Our main oncology doctors have visited, and their warmth and compassion for our son is evident. They are great doctors, and I KNOW they will figure out what the best treatment is to rid him of cancer once and for all...

So, we wait, and wait, for answers, for treatment options, for the day Alex is cured...for good.

Port or Picc...

Many of you may remember, that I promised Alex that if his cancer came back, that I would advocate for a Port right away, so he wouldn't have to have a Picc line put in his arm. I hoped that I wouldn't have to make good on that promise, because he would never have cancer again.

I was so very wrong.

Eric and I are working with the doctors to get Alex a Port right away. Because of his blood cells, the surgeons want to consult before they move forward.

We are shell shocked over his diagnosis, and are dumbfounded over the change in the diagnosis from T-cell to B-cell leukemia. Does this mean that he didn't relapse? Does it mean he did?

Until we get the chromosome tests back about what possibly is going on with his body...we will start treatment as "high risk leukemia - B-cell ALL". We will be in the hospital for at least 5 days, and after that...I don't know.

We will know more in the coming days/weeks, and will update you all with more information as soon as we know something new.

Thank you all for your kind words - it means so much to me that there are so many Warriors out there - helping Alex beat cancer once and for all...

Alex is laying down quietly chanting..."cancer sucks...I hate cancer...cancer sucks...I hate cancer..." Such strong words from such a young boy - but truer words, I have never heard...