Day +100

Today is day +100. I'm not sure why, but I expected fireworks, marching bands, waves of relief, joy without end ... you get the picture. Well, day +100 was just like any other day. Alex woke up, had his medicine, I nagged him about drinking enough water all day - which he didn't; then he took his medicine again and went to bed.

Alex is off most of his medication. There are three he takes during the week, with a fourth one just on the weekends.

Tacrolimus: We tried to ween him down on this one two weeks ago. He started flaring up with a good-sized Graft-vs-Host Disease rash (GVHD), so we adjusted the levels. Until he is off this medication, he can't go back to school, or be in big crowds. It was disappointing that the first taper did not work, but we just need to be more patient. We will continue to tweak the dosage until his new immune system can tolerate the new body.

Acyclovir: This medication is given for about a year, so we have at least 250 more days of it twice a day. It is an anti-viral medication, all the other "anti" medications are completed (i.e. antibiotic, anti-fungal)

Magnesium: As long as Alex is on Tacrolimus, he will be on a Magnesium supplement (4 *huge* tablets twice a day).

Septra: This antibiotic is given as a preventative measure for a specific type of pneumonia that is common among patients with compromised immune systems. He will be on this medication for at least another six months.

The last Chimera test came back with good results. The lab tests two cell lines in the blood. The first cell line was 100% donor cells (yay!) The second cell line was at 94% donor cells. This is down slightly from last month. The doctors are going to try to see if Alex can tolerate a little bit of GVHD, so that the donor immune system can wipe out the last 6% of his original cells. This is quite common, and nothing to get to concerned over. A bone marrow aspiration was done on last Tuesday to check for leukemic cells in his marrow. The doctors don't expect to find any, and we won't know for sure until next week. The waiting is so hard.

Alex likes to say that there is a battle going on in his body. It is a good analogy. For all of you Doctor Who fans out there, Alex likes to picture himself "regenerating", which to me is the best analogy.

Alex - Regenerating

What day +100 really means, is that the likelihood of major complications statistically drops significantly for patients who make it this far after transplant. I am so happy to be at this point however, one thing that has become crystal clear to me is that statistics are just numbers, and we aren't guaranteed success.

I have had nightmares, of Alex just dropping dead as we walked through a store. These nightmares are awful - I wake up in tears, and go and give my boy a big hug. I have dreams where Alex's birth-mother tells me "why didn't you keep him safe?". I want this to be over. I want to be done. I want the Hickman line in his chest removed. I want his body to work so he can enjoy his life - without the cloud of cancer. Is that too much to ask?

Good News (Day +83)

I have not been very consistent with my posts lately. As an intelligent woman, I understand that coincidences happen but emotionally, it feels like if I post when things are good, something bad will happen.

So, after some intense internal dialogue with myself, I realize that this is silly, and I need to share whether things are good or bad.

Today, Alex had clinic, and his creatinine level (kidney function) was higher than expected, so we need to work with him on drinking more during the day. We have a pump, and fluids that we can give him at night - but we don't want to rely on it.

Alex has always been a "sipper" - he hasn't ever "chugged" anything. Getting him to drink close to 60 ounces a day is honestly exhausting. We have to be on him all day long.

The good news is that the doctors are starting to taper his Tacrolimus (which is the anti-rejection medication)! This means, that if all goes according to plan, in a few months, we can discuss going back to school!

I am beyond excited about this - it is a huge milestone, and to get to it before day +100 is amazing.

Now, I'm off to pester my son about drinking again!

A Rough Day For This Momma (Day +82)

Yesterday, I got up at 6am, and drove to a bread plant. You see, Doerenbecher Children's Hospital Foundation was having a fundraiser. We got 1 hour and 45 minutes to roll out, cut and cook 10lbs of sugar cookie dough. This is my fourth or fifth year attending this event, and it touched my heart deeply.

The previous day, I had heard about a girl up at Doerenbecher who lost her battle with her illness. She was a very sweet young girl, around Alex's age. The news hit me harder than I thought it would, and I ended up having horrible nightmares about Alex succumbing to cancer. It was awful. I think I only ended up sleeping about three hours. This intense sadness wrapped around me, and shook me to my core.

While driving to the Doerenbecher cookie bake, I was listening to the radio. Susan, who is one of the Child-life specialists up at the hospital, was on the radio, talking about another Doerenbecher fundraiser. Hearing her familiar voice flood the inside of my car, had me bursting into tears.

Once I got to the actual event, I looked around at all of the people, and had to choke back tears again. Last year was Alex's first time at the cookie bake. He was done with cancer, having taken his last chemo pill only a few days earlier. We had a blast.

This year, it was just me.

Alex couldn't join me, since he is still on medications that keep him immune system suppressed. He woke up in time to see me leave for the cookie bake, and his sad face at the window was just one more point of sorrow for me.

I decided to only do 5 lbs of dough there, and came home with the rest of the dough to cook with Alex and Tessa. While I was decorating the cookies, Alex looked at me and said "It's ok, I'll go next year - and if my cancer comes back, and I can't go, we'll fight it off again!"

I smiled to hide the tears, kissed his head and held him tight.

Way Too Long (Day +62)

I have to say up front. I am sorry for the delay in updating the blog. It took me a while to figure out why I was blocked. Every time I sat down to write, I ended up on Facebook, or organizing old emails, or randomly surfing the internet.

Today is day +62 since transplant. How amazing to think we are now more than half-way to the 100 day milestone!

Since I wrote last, we have had our regular clinic appointments at least twice a week, and some changes in medication.

Alex has not needed any transfusions since we left the hospital (whew), although we continue to struggle with getting him to drink enough everyday. Last week, I actually asked for an infusion of saline, to increase his hydration. He is on a lot of medications, and without proper hydration, they don't flush out of his system properly, which can lead to complications (which we have so far avoided).

Our clinic appointments usually involve drawing blood, and getting a "once over" by the doctors. We have been successful in tapering Alex off of his steroids (whew). The doctors have added a couple of medicines in response to some of Alex's blood tests.

The Cyclophosphomide that Alex took as part of his "conditioning" prior to transplant, can affect magnesium levels for quite a while after the doses are administered. About 3 weeks ago, Alex started taking 4 huge magnesium pills twice a day to counteract that effect. Thus allowing his body to recover, and start absorbing magnesium on it's own. We were told to have Alex take the magnesium for 30 days. I am not sure if we will continue, or if we will be able to cut 8 pills from his daily medicine doses soon.

The Tacrolimus medication that Alex takes to suppress his immune system can cause high blood pressure. Alex is now on two additional pills called Amlodipine per day to help bring his blood pressure back into the normal zone.

Other than that, we give Alex his medications, we flush his Hickman line every night, and we go to clinic appointments, where they test his blood so that they can adjust medications as needed.

Alex's teacher from last year, has become his school tutor, which is just awesome! They already have a great relationship, and I am proud to say that Alex is doing very well with his school work!

Now that we are past day 60, Alex can eat food from a restaurant - but only take out - no eating inside one yet. Once he is tapered off the Tacrolimus, we can start to investigate returning to school, and going into stores and restaurants. Unfortunately, we don't know yet when they will be able to start the taper. All we are doing now is just waiting for Alex's body to adjust to his new marrow, and there is no real timetable for that. We just have to be patient.

100% Chimerism (Day +37)

Alex has 100% donor blood/marrow cells!!!! This is a tremendous milestone, and we are so excited for this great news!

A Milestone...Or Two (Day +35)

Life is moving at the speed of ... well, life!

We came home last Monday (10/10/11). It was a flurry of activity to get everything ready for Alex's homecoming. With the help of our wonderful friends and family, we were able to raise enough funds to pay for Alex's estimated medical care, and get our home ready for him.

With absolutely no *working* immune system, every bacteria, virus, or fungus, is a possible disaster. With this looming over us, we decided to replace our old, inefficient furnace with a new high-efficiency one with an incredible filtration system. Now, we can run the fan (drawing all the air through the filter), 24 hours a day without breaking the bank. We also were able to get all the ducting cleaned, so that this clean air is delivered to the vents and into our home. The last big item was the carpets. Since we went home sooner than expected, this item kept falling to the bottom of our list. But, with the carpets having to be done AT LEAST 24 hours before Alex could enter the home, we called around, and Oregon Chem-Dry was able to come out with less than 24 hours notice, and get the carpets clean.

Eric moved all the furniture off of the carpets on Friday night. On Saturday, after the carpets were cleaned, I came home, and started putting beds, and couches back together. With the help of our family, we were able to get the house almost completely put back together by the time I headed up the hill on Sunday morning. Eric continued the job of getting the house ready on Sunday night. Monday morning, Alex and I started packing, and Eric arrived to help us load up what turned out to be five red-wagon loads of "stuff" back to the car.

There was only one hitch... the doctors really wanted to get the "day 28" bone marrow aspiration before we left. It doesn't *have* to be done on day 28 - just "around" then. It is the first real milestone in this process.

The dilemma was the doctors would need to sedate him. Unfortunately, they had no idea what time an anesthesiologist would be available on Monday, and so, we had to have Alex NPO (which means no food by mouth) after midnight on Sunday, with no idea when he would actually go in. Since the doctors had prescribed an appetite stimulant to encourage food by mouth, this seemed like cruel and unusual punishment for a six year old. I made the executive decision to NOT give him the appetite stimulant that night, or the next morning.

We both slept hard, and were woken on Monday morning, with the news that a spot had opened up at 9:00 am, and that Alex would be sent to the sedation room in fifteen minutes. Alex was barely awake, and finished the procedure before Eric was able to get there. Watching the door close in my face, and my son is sent off into a Propofol fog is something I will never get used to. The doctors drilled a little hole in Alex's rear hip, to extract his marrow to determine four things:

1) Are there any leukemic cells present?
2) Are there any cells with the MLL chromosomal trans-location?
3) Is the marrow growing?
4) Is it the donor's marrow?

It took a week to find out the answers to three of the four questions. We hope to have an answer on the fourth on Thursday (crossing fingers and toes).

So...drum roll please...

1) There are absolutely NO leukemic cells present in the bone marrow sample!
2) There are absolutely NO cells with the MLL chromosomal trans-location!
3) The marrow cells are already at about 30-40% of the sample (normal is 50-60%). So YES, the cells are growing!
4) This is the one we are still waiting on. The doctors said before we left that they like to see at least 70% donor marrow on day 28. According to Alex's doctors today, they are anticipating 100% donor cells. We won't know for sure for a bit, but with the conditioning he received (the radiation and chemo), the doctors are very confident that his blood counts are reflective of a good donor graft!

Speaking of good counts... I wanted to explain some of the numbers I may use in the blog from time to time.

ANC - Absolute Neutrophil Count. This number was *very* important during Alex's treatment for Lymphoma. It determined whether we could go out in public, or school, or have to stay home. This is the number of a certain type of white blood cell, and the number determined his ability to use his immune system.  Everything changed once the transplant was done. Now, his ANC is in the normal range (which is a good thing!), but the medications he is taking makes them useless right now. No matter what his ANC is right now, we are to act as if his ANC is zero.

BMT - Bone Marrow Transplant. Contrary to how it sounds, Alex did not have to have surgery for the transplant. The donor - on the other side of the world, went in, had her hips drilled over and over to collect the marrow. On the same day, that marrow was flown to Doerenbecher and processed. Then, the processed marrow was hung in a bag on an IV pole, and slowly dripped into his body. Since this new marrow is from a different person, there are reactions that are anticipated, and dealt with accordingly. The biggest issue is Graft Versus. Host Disease, which is being treated with a couple different medications.

GVHD - Graft Versus Host Disease. Alex's new immune system (the donor's), is recognizing Alex's old immune system as "foreign", and is attacking it. This is a good thing in small measures. There are even a few studies showing that patients who present with some GVHD after a BMT, are less likely to have their leukemia return. (I have read this, and heard it from the doctors, but would love to read the actual studies - and to see if any of them were with pediatric patients.) To counteract the GVHD, and allow his new immune system to fight off any remaining old cells (that could potentially be cancerous), Alex is on steroids, and another drug, which reduces the new immune systems ability ramp up for a major battle, letting his new immune system  learn to "get along" with his body.

Prednisone - A steroid used to reduce the incidence of GVHD. We are slowly tapering Alex off of this medication, and if no new GVHD incidents erupt, we should be done with this medication by November 7th. This is also the steroid that makes Alex super hungry. (No need for an appetite stimulant anymore!)

Tacrolimus - A medication used to reduce the risk of Alex's body rejecting the new marrow. This level is monitored *very* closely, and once we are done tapering the steroids, we will probably start weaning Alex off the Tacrolimus as well. On his clinic days, Alex does not take his morning Tacrolimus dose until after he gets a blood draw to check how his body is metabolizing the drug.

Ursodiol - A medication used to protect the liver. This is a medication strictly to counteract some of the side effects of the other medications, and conditioning Alex received before the BMT. Alex will take this medication until at least day +90.

Acyclovir - Alex tested positive for herpes before his BMT (80% of the population tests positive), so while his immune system is suppressed, this medication is given to counteract any herpes virus that may have made it past the conditioning. It is also used as a general anti-viral medication for BMT patients.

Voriconazole - This is a broad-spectrum anti-fungal medication that Alex will take until at least day +75.

Omeprazole - This is heart-burn medication used to help Alex with the Prednisone (which can be hard on the stomach. He will take this until he is done with the steroid.

Trimethoprim/sulfamethoxazole - Also known as Septra. This is an antibiotic to ward against a common strain of pneumonia that is common in immune compromised people. We take this only on the weekends as a preventative measure.

All of these medications are given at least once (most twice) a day. They are all sizes of pills, and capsules. Alex takes them all individually with apple sauce. Alex is doing tremendously well - he is eating a whole lot - so, we have avoided having to use the feeding tube (one less thing to worry about). Our biggest struggle right now is the amount of liquid he is supposed to have per day (anything that is liquid at room temperature counts, i.e. ice cream). He is supposed to drink 52 ounces of water a day. So far, on a good day, nagging him *constantly* we are getting only 30-40 ounces.

The hardest thing for us as a family right now (especially me and Alex) is feeling so disconnected from everything. Friends must be completely healthy and have a flu shot before they can play. So far, only one kid has met that requirement, and played with Alex.

We are working on a new routine, keeping Alex away from so many germs...it is enough to drive anyone crazy. I'm afraid I am just about there...

Going Home (Day +27)

Yes. We are packing up, as I type this...

I have lots to tell everyone, and once we are settled back at home, I will get you all up to date!!!!

A Curious Case Of The Sneezers (Day +23)

I know it has been a while since I have posted. Medically, things are moving in the right direction. Alex's white cells and red cells continue to grow and multiply, and he hasn't needed a transfusion in quite a few days.

He did start to show a bit of a rash on his arms and neck again, so the decision was made to put him on steroids (although only a half-dose), to help his body and new immune system try to get along.

The number of active pumps and tubes going into his body has reduced, as his mouth sores have vanished, and he can start to take more medications by mouth.

We have also weened him off of his TPN and Lipids (the IV nutrition), and gave him an appetite stimulant. It seems that he has rounded the bend, and is starting to eat and drink without the nausea that plagued his earlier attempts. Today, he has eaten three individual boxes of cereal, and some pasta noodles, some milk, and a Nutragrain cereal bar, and it is only 2:30!

So, we have been moving right along, hoping to blow this joint next week. The main focus now is getting his caloric and liquid high enough without IV support, to sustain him at home. Each day we are replacing another IV medication with an oral version. He still has a bit of a struggle with wanting to take them. The memory of his nausea, and not being able to keep down a pill is still clear in his mind. We hope that with each successful dose, he will be positively reinforced, and we will reduce the number of battles over oral medications.

Yesterday afternoon Alex started sneezing. At first, it was just every once in a while, and then it grew more and more frequent as the evening progressed. He would grab a tissue each time he sneezed, but there wasn't a lot of "stuff" to wipe. I started getting nervous that he might be coming down with some type of cold. The nurses and doctors took note, and reassured me that he was already on anti-virals, antibiotics, and anti-fungals, so they were just going to watch and see what he did.

About 7pm, Alex took his appetite stimulant, and started to get interested in food. By 9pm, he was asking for a big slice of pepperoni pizza (which had been graciously provided by Candelighters earlier that evening). Alex ate that piece within 20 minutes, and hasn't sneezed since.

All night, and all day today, the sneezes have been absent. No runny nose, no cough, no lethargy. So, it seems that pepperoni pizza is a cure for the sneezers - who'da thunk?

Realistically, it could have been something in the air, who knows, obviously pepperoni doesn't cure sneezes, but it has been a fun story to tell!

Warriors 4 Alex

On Saturday, we walked for Alex, we walked to help raise money for a cure for blood cancers.

We walked with over 60 Warriors. It was a great night...

I had the honor of talking about Alex, and our struggles. I was nervous, but think I said all I had in my notes. I was humbled to see how many people were there.

I was surprised that the MC for the night was Jolynn Winter, who used to be our neighbor. She knew of Alex's original diagnosis, but did not realize that he was the same Alex that was the honored hero for this year's Light The Night.  Her heartfelt introduction before my short speech meant a lot to me.

Alaska Airlines gave us some wrist bands that said "Won't Back Down" on them, and we were very touched that they thought so much of our boy. Another team, the Myeloma Mashers is working with our team captain, Melissa on a fundraiser to finish off the fundraising year. Even Dutch Bros. in Beaverton has joined in with a fundraising day for us later this month.

Eric and Alex stayed up at Doerenbecher, while Tessa and I joined the rest of the walkers at the convention center. I really missed both of them. Alex was really upset that he couldn't go. However, Eric got permission for Alex to leave the ward so he could see the fireworks!

The rain stayed away, and we enjoyed a beautiful night, with a fireworks show. Tessa LOVED the fireworks. We even got to lead the walk, and started with Tom Petty's "Won't Back Down" - Alex's battle cry.

I didn't get to spend a whole lot of time with many of the people who came for the walk. I wish that I had time to properly thank ALL of you for your dedication, and support of our family.

I treasure the memory of that night, and will be back next year, with Alex and Eric joining us.

Blocked

Alex is doing well... a bit of a rash, which is being treated with steroids. I have so much to say... about the Light The Night Walk, about what has been going on these last few days, but I am blocked. Maybe I will feel like writing tomorrow.

Day +16

Alex is doing great. We haven't had a nose bleed today, so far - which is a first in quite a while. The doctors are holding off giving any additional transfusions unless he really needs them. So, far today, no red blood cells or platelets are ordered.

Taking pills are still really hard, and Alex threw up one this morning. His gut just hasn't had to work for two weeks, and is rejecting anything going down. He did take some swallows of soda last night... although nothing today...yet.

His bottom is feeling better, and his fever has stayed away. No word on a definitive release date yet, we are just waiting for his counts to start coming up.

We are having been butting heads over routine, which is such a hard thing to keep to here in the hospital. I worry so much about him not keeping up with school, and then being discouraged when he finally can  to go back.

We are working on getting the house ready for Alex to come home...hopefully sometime next week (gulp!) I have a lot of things I wanted to do, and the days just slipped on by...

This weekend is the Leukemia & Lymphoma Society Light the Night Walk. Alex and Eric will watch it from here in the hospital, and I will walk with our team. I have been told that we will be leading the walk this year, and will be starting the walk with Tom Petty's "Won't Back Down" song... Alex's Battle Cry.

Here are the lyrics...

Songwriters: Petty, Tom/Lynne, Jeff

Well I won't back down, no I won't back down
You could stand me up at the gate of hell
But I won't back down

Gonna stand my ground, won't be turned around
And I"ll keep this world from draggin' me down
Gonna stand my ground and I won't back down

Hey baby, there ain't no easy way out
Hey I will stand my ground
And I won't back down

Well I know what's right, I got just one life
In a world that keeps on pushin' me around
But I'll stand my ground and I won't back down

Hey baby, there ain't no easy way out
Hey I will stand my ground
And I won't back down

Sing it loud as we start the walk... I will be!

Remember, it is not too late to donate...
Click Here to donate to our team!

Day +14

Two weeks... it is hard to believe.

Two weeks ago we knew Alex's new cells were in the building, but not sure when they would start the transplant.

Two weeks ago, I was a nervous wreck.

I guess some things don't change. I still worry *a lot*.

Alex has had nose bleeds every night. They usually take at least 20 minutes to subside. It happened again last night, and his platelets weren't that low (considering). So, we transfused again.

I don't know exactly what a first grader should be learning, and I am feeling a whole lot of pressure to keep him engaged in education, but not force it, so that he ends up resenting it. I will keep going just day to day, and hopefully, we will have an easy transition back to school at some point.

Alex is at hospital school right now, so I have a moment to type an update. The doctors came by, and said that Alex is doing really well. He only has a couple of sores on his bottom, and some intestinal issues, and still doesn't want to eat. But, that is all expected at this point. He seems to have avoided needing steroids, which is good.

Yesterday his feet started "burning up". He was just standing up, with socks on, and started jumping from foot to foot, yelping "hot, hot...ouch"! He tore off the socks, sat on the bed, and demanded ice packs. The nurse promptly brought one for each foot. Alex let out a huge sigh of relief.

I was quite perplexed by this, until I spoke with some of the staff that said it is common for the kiddos to report major heat on their feet and hands during engraftment. No one knows why. I am taking it as a good sign, that his new cells are doing their job.

The doctors just came in, and said that Alex is not using the morphine button very much, so they are going to start lowering the dose, and weaning him off of it, and on to oral medications.

Doctor Stork said that with his current trend, she wouldn't be too surprised if he was ready to be discharged around day 20... *say what?!?* Yup - day 20. A lot can change between then and now, so while we will start working on getting the house ready for him to come home, I am not convinced it will be that day. But, as we know with Alex...he always surprises us!

Oh...and we are out of isolation!

What A Difference A Day Makes (Day +12)

I'm sorry I kind of left you all hanging with my last blog post. Alex's fever continued up until last night. We have been in isolation due to the C-Diff. issue. Being cooped up in that room for 10 days straight is hard - on everyone.

We have had quite a few struggles with oral medication, leading up to Alex actually throwing back up a Tylenol pill moments after he gagged it down. With fevers continuing up in the 103 range, we had to get him cooled off. Acetaminophen (Tylenol) is the best way to get a fever down quick. The nurse said that since Alex had started throwing up the pill, and his fever was acute, that he qualified for IV acetaminophen. The FDA only approved an Intravenous version of Tylenol last November, for use beginning in first quarter 2011. With everything else going through his Hickman Line, I was astonished to hear that IV acetaminophen was just now approved. Sometimes science seems to be so quick, and others, it seems impossibly slow.

Alex overheard the nurse tell us that he qualified for the IV version, and promptly said he would wait on the doctors to order it, and the pharmacy to send it up (hospital time...likely 4 hours at least). With his little body roasting in Eric's lap, we had a huge struggle to get the liquid Tylenol into his protesting mouth. Once he swallowed it, he calmed down quickly, and the first words out of his mouth were "hmm, I like it" *doh*! So, no need for IV acetaminophen after all.

There was one other medication that had to be taken in pill form (no liquid or IV alternative), so Eric and the nurse decided to try crushing the pill, and suspending it in the liquid Tylenol. That worked well, and with less protest, Alex took his oral medications as needed. Now that his fever is gone, he doesn't need the Tylenol, so he is back to taking his one oral medication with apple sauce. It is still a struggle to get him to take it, but at least he isn't throwing it back up.

Alex's body is having a hard time holding on to platelets. He has needed a transfusion every day since my last post. Last night, even after receiving his daily dose of platelets, he had a severe nose bleed. It freaked Alex out, and he kept yelling "when is it going to stop...mommy, when?!?" I got the nurse right away, and we had to convince him to let us pinch his nose, and keep it pinched to slow the bleeding. He also wanted to lift his head up to keep the blood from coming out, which the nurse explained could cause him to aspirate blood, or swallow, and subsequently vomit blood. I am so glad the nurse was there, because for whatever reason, with everything both Alex and I have held together, this was really wigging us both out. (I have probably seen too many science fiction movies, where calamity all starts with a bloody nose). Alex kept screaming that he couldn't breath. I started loudly breathing through my mouth, and Alex followed suit, and we both calmed down together. Twenty five minutes later, he was falling asleep in my arms, with the nurse and me taking turns holding his nose. Platelets were ordered, and as soon as they started dripping into his veins, his nose bleed subsided. That being said, this morning was the first morning he didn't need platelets! We'll see how that trend continues tomorrow morning.

On day +9, I noticed a rash on his torso, cheeks, and arms. There was much discussion about the rash. Was it caused by the fever, or was it bacterial (more blood samples to the lab), or was it Graft Versus Host Disease (GVHD). It didn't look too much like a viral rash, and none of his blood samples were growing anything to point to bacterial infection, so it seems to be GVHD. As the U.S. National Library of Medicine states: "Absolute prevention of GVHD is not possible, and is a risk when receiving a transplant from anyone else."

To complicate matters, since Alex was on isolation for C.Diff, some of the symptoms overlapped, so what was C.Diff, what was GVHD, or was something else reeking havoc on our boy? Alex slept a lot the next few days, but felt great when the Tylenol was working.

Today, Alex woke up fever free, and for the first time in 10 days, the nurses and doctors all came in without the protective gowns, gloves, and masks. It is hard to explain the emotional impact that had on me. It really lifted my heart. We were told that Alex had completed his C.Diff. treatment and was "free to move about the ward". We got dressed, and I promptly walked down to the family kitchen to get myself a proper cup of coffee (if what they have there can be called proper). Alex tagged along, dragging his pole with all seven pumps on it. We made one circuit of the clinic, and then went back to the room. Alex quickly ran to the bathroom, had more diarrhea... and we were back in isolation. We made the best of it, but I have to admit, that when the nurse came back in with the gloves and gown back on, I felt like we had taken a step back. A sample was sent to the lab, and we waited for the results.

As I was taking Tessa back home tonight, Eric called and said that the C.Diff. test came back negative (YAY!), which should mean we were out of isolation. Alex hadn't had a fever, his rash was subsiding, and C.Diff. was clear. Eric asked if this meant Alex could go to the hospital school in the morning, and the doctor on duty hymned and hawed, and said they want to wait to see if the diarrhea continues.

ARGH!!!! Alex has been cooped up for 10 days... from my perspective, the diarrhea along with the rash and fever scream GVHD. Eric agrees, and is going to continue to press the doctors and nurses to let him out of his room.

We want to be mindful of the other patients, just as we hope others are mindful of Alex, however, unless the doctors can come up with a test showing that Alex is contagious, or could "possibly" be contagious, we want Alex back in the hospital school. It is amazing how healing "normal" activity can be, even if it is just the freedom to walk out your bedroom door.

So, after this novella, you should all be up to date. To recap:

Fever = Gone
Number of Pumps = 7
Rash = Fading
GVHD = Most likely
Isolation = Being contested
Number of Hemoglobin Transfusions this week = 1
Number of Platelet Transfusions = 5
Energy Level = Improving
C.Diff = Negative
Bacterial Infection = Negative
Rhino Virus = Negative
Liver Function = Excellent
Mouth Sores = Continuing
Bone Pain = Relief with morphine
Hair = Falling Out
Spirits = Determined and strong
Gaming System = Xbox installed and operational
Food By Mouth = None
Drink By Mouth = Sips here and there
Nutrition = Provided by IV
Prognosis = Excellent

Three Years Ago

Three years ago, on what was probably a beautiful Northwest Autumn day much like today, a cell in Alex's Thymus Gland divided. This was a very common, routine and quite frequent occurrence in a three and a half year old. When this particular cell split, through a process called Mitosis, a simple switch that controlled cell division was damaged.

Normally, an immune response would commence, and this defective cell would be destroyed, and absorbed back into the body. However, this cell divided and divided again. Unlike the other T-cells in his body, this cell and it's descendants did not die off after a few days, or weeks.



No one knows why Alex's immune system failed to recognize this cell. No one knows how this destructive cancer T-cell deceived his body. One cell became two, then four, eight, sixteen, and so on. All we do know, is that by the time we noticed that something was wrong, billions of those cells had gathered a formidable alliance to end Alex's life. It was a suicide mission, in that once Alex's heart stopped beating, their life would end too.

The mass that was formed by these billions of cancer cells was doubling in size every 24 to 48 hours. When his cancer was diagnosed just two months later, he was less than two days away from suffocating in his sleep.

We fought this cancer. We fought hard. We poisoned our son in order to save his life. Alex took pills, received shots, had surgeries, endured nausea, all to eradicate EVERY SINGLE cancerous cell in his body.

In November of 2010, Alex took his last Chemo pill, and we said "good riddance" to cancer.

Or so we thought.

Somewhere along the line, during Alex's treatment, one of his Chemo drugs caused a genetic mutation in the blood cells we were trying to save. A chromosomal translocation involving his 4th and 11th chromosomes, altered a gene called MLL - and his blood cells started dividing uncontrollably again. Within five months of finishing treatment for Lymphoma, we were told that Alex needed a bone marrow transplant to cure him. His spleen was engorged just about to the point of rupturing with white blood cells, he was severely anemic, and had almost no platelets.

I want everyone to stop for a second and re-read that paragraph. The CURE for his Lymphoma *directly* CAUSED his Leukemia. The CURE caused his secondary cancer. Radiation and high-dose Chemo along with a volunteer donor for his new marrow was his only hope for survival.

Alex has his new marrow, and is in the throws of engraftment, and radiation poisoning as I type this. He has seven pumps directing medicine, and blood products into his body to support him while the new marrow painfully attaches to his bones, to take over blood production.

All of this pain and suffering from the Leukemia, ALL of it could have been avoided, if the cure for his Lymphoma did not cause the genetic mutation. But it did, and it is a damn good drug in the arsenal to fight blood cancers. But it is not good enough. We need a cure that uses our own body to fight off cancer cells. Our bodies make them every day - and yet, we don't all get cancer. We all don't have to spend our 1st grade school year in a hospital, terrified of any type of bacteria or virus. We don't all have to writhe in pain as new marrow implants in our bones. We don't all have to push a morphine button to get relief.

It only takes one cell to divide incorrectly to start this chain of events. One cell, out of billions and trillions of cell divisions that take place in your body. One cell to devastate a family, and send loved ones into a nightmare.

Only science and research, the type that the Leukemia and Lymphoma Society funds, can make cancer curable. Only money can fund that research. Please help us fund research to cure blood cancers. The cures we have aren't good enough.

Please donate to our Light the Night Team, Warriors 4 Alex, or go to this link, scroll to the bottom, and join our team and walk with us on October 1st.

Day +7

The day was pretty basic, school work, Dr. Who, a transfusion of platelets, and naps. The doctor's ordered Alex's morphine button. As Alex starts to slow down, and feel more of the effects of the radiation, and chemo he has started using the button.

This afternoon, Alex started having a fever. It got as high as 102.7. The doctors said that this is common, and they drew blood cultures to see what is going on. With a total of now seven pumps, directing all sorts of medication into his body, we have quite a few of possible causes for the fever covered.

Alex has choked down Tylenol, which brings his fever down, to where he is comfortable. He still isn't eating or drinking, but we hope with the morphine, that he will feel good enough to eat and drink soon.

Day +6

Last night was awful... Alex has six pumps, directing all sorts of medication and nutrients into his body. Each one of these pumps decided to go into Alarm Mode at different times, *all*night*long*. If the windows opened, in this room, and the pole wasn't attached to Alex, It would be a twisted piece of metal and electronics by now.

The night nurse on duty, would come in, hit "reset", and then leave - and two minutes later, that pump, or another would go off. Needless to say, neither Alex or I got much sleep last night.

Finally at, 3:30 this morning, Alex had had enough, and was wide awake. His new Dr. Who graphic novel kept him occupied for a while, and then, I relented, and the Disney channel was activated.

I tried to sleep, but obnoxious young people, who CANNOT act, kept invading my dreams...

Alex had decent energy this morning, even after vomiting while trying to take his morning pill (the liquid form still hasn't found it's way into his mouth yet). We played games, and even got him unhooked from his MMDD long enough to take a shower.

After changing his Hickman line dressing, he settled down in bed, and I ran downstairs to the cafeteria for some lunch. When I returned (after a great phone conversation with my sister), Alex was asleep. That was at 1pm. It is now almost 4:30, and Alex is still out cold.

I had a long conversation with his hospital teacher, and am *very* pleased with her plan for him. I appreciate her style, and she appreciated my input. I think we will make a great education team.

I am so proud of our boy...he is so strong, and all the doctors are amazed that he is not asking for any pain medication for the mouth sores. That may change, but for now, he is just toughing it out. Since he wants needs to have something to control, we are letting him decide whether or not he wants pain medication, and so far, he doesn't.

He will probably need platelets tomorrow, and maybe blood too...we will see what tomorrow brings.

Day +2, +3, +4, +5

Alex's nose swab came back negative for any type of cold virus, so the nurses don't have to wear a mask when they come in the room. Unfortunately, the C-Diff test came back positive, so we are stuck in the room for another five days (total of ten days in isolation for C-Diff).

Amazingly, Alex's energy has remained very good, considering the amount of radiation, and Chemo he received. Today is Day +6, and we are just starting to see some nausea. The doctors are quite surprised, since most kiddos are so sick and exhausted by day 3 or 4. But, Alex has always been one to buck the trends, so why stop now?

Our days are full of sitting in a small room. The hospital teacher comes in from 11:45 to 12:30 each weekday to work with Alex. We have a sticker chart, and try to make sure that we get everything done each day, including reading and school work.

Other things on the chart are getting much harder to check off. The squares for breakfast, lunch, dinner, and drinking have all been blank for the past three days. The mouth sores have erupted in Alex's mouth, and he refuses to eat or drink anything. Right now he is receiving his nutrition and fluids via IV. His weight is maintaining, so it seems to be working.

We have been having difficulty getting his one pill down. Everything that can be given through an IV is running through one of the six pumps on his "mobile medication dispensing device" (MMDD), aka, his IV pole. This morning, he actually vomited before taking the pill, so we have asked for that one to be switched to a liquid form, to see if he can get it down.

So far, he has received one transfusion of red blood cells, and one unit of platelets, with more on the horizon. Even though his donor marrow is A+, the doctors will continue to transfuse O+ blood (his old blood type), since O is universal. With platelets, the doctors prefer A+. I am not exactly sure of the science behind it, but as soon as I know why, I will pass it on to all of you.

Email, Voicemail, and Texts... Oh My!

Hello all,

I am writing an update right now. I just wanted to let everyone know that I am receiving all your good wishes, from every conceivable type of communication device.

I want to say "Thank You" to all of you personally, but, in all honesty, it isn't going to happen any time soon, so, please know that your love and concern for our whole family is TRULY felt and appreciated.

If I don't answer the phone, it is probably because I am too overwhelmed to talk. Email and Google Talk seem to be the easiest way to get a hold of me. I know so many are wondering what they can do for us. Honestly, I am not thinking all that clearly, and it is hard to come up with anything.

I would like to ask for someone to help by being a volunteer coordinator, and that if people want to help, I can direct them to you. Also, that if you have something in mind, just send me an email asking me when you can do it.

We are living moment to moment, and I am having a real hard time thinking, or planning ahead.

A Line In The Sand

Since it was obvious that school work was non-negotiable, Alex waited until 10 pm to draw a new line...at taking pills.

Much yelling, and body flailing ensued. A nurse came in, and between the two of us, it took me holding Alex down, with my legs over his, one arm holding him arms, and one arm holding his forehead, and the nurse opening his mouth, and shoving the spoon with the medicine in it to get the two tiny pills down.

It was as complicated, and horrible as that last sentence.

Alex fell asleep soon afterwards, but me, I am still shaking, and crying from it all.

Cancer sucks.

Day +1

Today is family day, the day that Alex, Eric, and I became a forever family. We have two each year, one in May for Tessa, and today for Alex. Instead of getting all bent out of shape for being here, and not having our family unit together, I am looking at this as the first day of the rest of our lives...living cancer free.

Even the events of the day do not spoil my enthusiasm for the significance of today. Both Eric and I stayed here last night, so we took turns helping Alex throughout the night. The nurse had warned us that after transplant, Alex's urine would be dark. So, while we were warned, we were not prepared for the purple grape juice colored pee we collected in the urinal. Wow...THAT was dark. After two more collections, his urine was still quite dark red, so a sample was sent to the lab for analysis.

This morning, Alex woke up, sniffled, and sneezed a few times. Not the sounds we hoped for. With no immune system, even the antibiotics and anti-viral medications he is continously on are not always effective. As soon as the nurse notified the doctors, we were put on isolation status. Of course, he hasn't sniffled at all since, but we can't take any chances. A nose swab was ordered, and, as we all know, he HATES nose swabs. I held his head and Eric held his feet. It was awful. The nurse sent the nose swab for PCR testing, which should only take 24 hours. So, Alex is stuck in this room, until he is symptom free (check), and his PCR testing comes back negative for a virus or bacterial infection.

The doctors came in en masse, and told us that there was no blood in the discolored urine, and that it was common in transplants to have it happen, but it was just lasting longer than anticipated. They want to rule out any bladder or kidney issues, so a sample of urine was sent down to the lab as well. The nurse came in after rounds, and reiterated to us that these conditions the doctors are testing for, usually are accompanied by excruciating pain, which was not the case for Alex.

By this time, Alex was bored, and frustrated at not being able to leave. Unfortunately, he decided to draw a line in the sand right in time for us to start school work. Since he was in isolation, I was "teacher" for the moment. It took over one hour in and out of time outs before he got his school work done.Thankfully, Alex's Chemo Pal showed up, and played with him for a couple of hours. Eric took the opportunity to get more work done, and I took the opportunity to nap, and get rid of the headache I had sprouted.

Lunch arrived while Reid was here, and we just ignored it until it was just the three of us again. Another power struggle ensued, and ended with Alex throwing up. We are exhausted, and hoping for a better day tomorrow. I just have to remind myself that this strong spirit has served him well through this process, and that I still have the chance to butt heads with him. Some parents don't have that luxury.

We love Alex so much... so, so much...

A+

I think it is completely fitting that Alex's new blood type is A positive, otherwise known as A+.

Alex was such a trouper yesterday, we know how embarrassed he gets when so many people are focused on him. Of a course, everyone on the transplant team, along with multiple nurses were there when the marrow was hung. It was strange...

Looking at less than four ounces of fluid that would save his life.

Knowing a battle for his very being was about to take place.

Watching as old and new immune systems met for the first time.

Seeing Alex's body react as sweat appeared, and his throat thickened up.

Joining in a sigh of relief when a simple push of Benadryl calmed his system down

Laughing with the nurses, to break the tension in the room.

Rejoycing when the final cells were sent through the tubes, into our sweet boy.

Hoping that all of this leads to a cure for Alex for good.

I think Alex deserves an A+.

What A Day

What an amazing day. So much to say, but my brain is too tired... More updates to follow tomorrow.

A Slow Drip

Alex is sensitive to the few white blood cells in the marrow, so, we are doing the less than three ounces (76 mls) of this life saving liquid extreamly slowly. He started to have a reaction (sweats, gaging, swolen throat and tongue), so the nurses, who are prepared with all sorts of medications, up to and including Epinepherin, are watching over him, and manually controlling the drip.

He is only getting 1/2 of the harvested marrow, so we have extra frozen in case he needs more later. So amazing...

Here We Go!

Hospital Time

Still waiting...looks like closer to 3:30.

Alex got the Benedryl, and is a tired boy... I will let you all know when the cells actually make it here.

2:30 target

The nurses will be bringing in the Benadryl in a few minutes...which means transplant at about 2:30!

Is It Time Yet?

Nope...but soon!

Alex is in the hospital school, blowing up volcanoes, and charting how far airplanes fly down the hall...

The Cells Are In The Building

The lab just asked the nurse for a new blood draw, to type and screen what is left of Alex's original blood. Which means the cells are here at OHSU...the processing will begin shortly, and then, this afternoon, these amazing cells will be placed into Alex...

Day 0

Today is the day. I can't sleep any longer.

Alex has started TPN, which is a nutritional supplement through his line. He just was not eating enough. It isn't a long term solution...hopefully we can get him to eat enough to keep his gut working, and avoid going on a feeding tube. If not, then the doctors insert a tube down Alex's nose into his stomach, until he feels well enough to eat.

There is another little boy about the same age as Alex, who is also having his BMT today. I haven't talked to his family much, so I will just call him Max for now. Max's older brother is his donor, and he seems so humble about what he is going to do for his little brother today.

Alex and Max would pass each other on stretchers going to and from radiation. With HIPA rules in place, none of the staff can tell one family about another, even if they are sharing the same experience. So we 10 South families learn to tune our ears to listen for any similarities between our children to help us feel less alone in this place.

Day Minus 1

Today is a day of rest. No radiation, no Chemo, just prepatory medications to make sure his body is ready to receive the bone marrow tomorrow.

This morning, somewhere in the world, a total stranger walked into her doctor's office, and voluntarily allowed surgeons to put her under, and drill over one hundred tiny holes in her hip bones to extract her bone marrow. Then, a courier, another total stranger took this marrow, and jumped on a plane headed towards Portland. We know it wasn't a direct flight, and it wasn't until about 2pm before we knew that this transporter of life saving marrow, had made the major connections, and we were told that the marrow would definitely be here by the morning.

The hospital here will process it, and then hang it like a blood transfusion tomorrow between noon and 3pm.

I am just in awe that Alex's cure is in the air, on a plane...flying to us as I type this...what an amazing world we live in...what amazing advances in science, and cooperations between nations that are allowing our son the chance to live a LONG and full life...cancer free.

There is a long road to recovery...but once that marrow drips into his veins, and finds it's new home in Alex's bones, the days start counting up... new days, a new beginning...a new birthday... good night everyone...

Day Minus 2

Day Minus two was relatively uneventful. Alex received the Cytoxan around 9am, and supporting medications to coat his bladder. Eric was sleeping here at the hospital, and had to get up with him every two hours to make sure that Alex was urinating enough.

At one point, while Alex, Tessa and I were watching the Phineas and Ferb movie, Eric headed down to the cafeteria, just to take a much needed break. During that time, the nurse came in, and said that his "output" was not nearly enough, and the doctor ordered Lasix... not more than five minutes after it was administered, he was jumping off the bed, and within 1/2 hour, he had filled up a one liter urinal.

Alex still has all his hair, and has only thrown up once ( it was a gag reflex from the awful tasting mouthwash he has to use every few hours). His spirit is good, and so is his energy. I know that may change here soon, so I am enjoying it as much as I can.

Dear Tessa

Dear Tessa,

I am not sure how much of this time you are going to remember. You were only 8 months old when Alex was first diagnosed with cancer. We only had 5 short months of "normal" before cancer came and disrupted our lives again.

Now you are the same age as Alex was the first time. I realize how much the doctors and us expected out of Alex, and yearn for you to stay young and innocent much longer than your brother got to.

I love hearing you sing string-of-consciousness songs, such as: "I am walking down the stairs...walking down the stairs...now I am going potty...I am going PEE!" My heart just swells when I look at you.

This isn't fair. This isn't fair at all. You should have equal time with us and your brother. We should all spend each night under the same roof. We should all eat together, and laugh, and have tickle wars together. All of us. It isn't fair.

I want you to know how much fun I have had with you today. Yesterday, you walked into Alex's hospital room, and noticed all the tubes, buttons, and lights. You took it all in. You were so excited by the Ritz Cheese Cracker Spread package that Alex shared with you.

You ran through the hallways of the unit like you had been doing it all your life (oh, ya...you almost have). We headed home, and had dinner with Grandma Diana, Grandpa Bob, and Great-Auntie Bonnie.

Today, you woke up, and crawled into bed with me. After a while, we got up, and had pancakes and sausage. Then, the fun began. We put on our gardening gloves and shoes, and dug up potatoes from the garden. It was like digging for treasure! As you like to say (with one eye closed), "aaarghhh ladies!"

After we were completely dirty, we came in, and you took a bath. You started showing me what you leaned in swimming class. You are quite a water baby! I can't wait until I can come and watch your swim skills in action.

My friend, Erin invited us over to play for a few hours. So, we headed over there, and you played so well with her three kiddos! After an enjoyable afternoon, we headed up the hill with a present for Alex from Erin's family.

You jumped into Alex's room, showing him the new Phineas and Ferb movie. For about two hours, we were all together, watching a movie, laughing together. It made my heart feel so good. You and Alex play so well together, and I am so glad you two are friends. Your smiles, and pure joy, lifted so much weight off my shoulders.

After the movie was over, we ate dinner in the cafeteria, and headed home. You fell asleep on the way home, and I carried you sweet body straight to bed, where I hear you now softly breathing/snoring in the room next to me.

I love you, sweetheart. With all my heart. We are working so hard to get your brother healthy, so we can continue laughing together...for a very long time.

Day Minus 3

Alex woke up in a good mood today - no pain, no nausea. He ordered breakfast, and with the threat of a feeding tube, or TPN (nutrition through his central line), he decided to eat half of an English Muffin and another one of the Ensure apple drinks.

The Cytoxan poison (the Mustard Gas derivative) was started at 9am this morning, and ran for an hour. He is on continuous fluids, and a medication that helps protect his bladder from the potential for the Chemo to cause bladder cancer. I expected nausea, but he is doing well. The nurses are monitoring his fluid input and output to make sure that his bladder is adequately protected. This means peeing every two hours for the next two days. Sleep, well - I'm learning it is overrated...

Lunch has proven to be a bigger success, with Doritos, and a ham sandwich. Every bite is a victory, although I know Alex is already annoyed at my constant catch phrase..."eat...eat...just take a bite, and I will leave you alone...eat!"

Alex's Chemo Pal should be up here shortly, I expect much chaos, and laughter to follow - it does my heart good to hear the laughter - it really does.

Day Minus 4

Today was Alex's last two radiation treatments, and what a difference a day makes. Today, he was full of energy, and running around like the Alex we all know and love.

He smiled for the camera when I told him that we hoped to never EVER see a LINAC again.

It is truly amazing how quickly things become "routine" around here. The ride on the gurney is no big deal. Climbing into the radiation chair, no big deal. Even the two feet of concrete and lead sliding closed, wasn't nearly as traumatic for me as it was the first day.

Since this was our last treatment, I took pictures of the "high-tech" calibration devices.


This is the wooden dowel "device" that made sure he was the proper distance from the wall.


This is the LINAC with the brass plates attached to it with masking tape, to ensure that he received the same concentration of radiation throughout his body.

In-between radiation appointments, we spent a lot of time in the playroom, working with CHAP (Children's Healing Art Project). We made a t-shirt, and worked with clay and paint, and paper.



We then came back to the room, and finished decorating Alex's hospital door...5 points to whoever guesses what it is *smile*



Alex isn't eating all that much - and wouldn't touch either dinner that I ordered for him. We got some Ensure Enlive Theraputic Drink (tastes like apple juice) in him, but that is about it.

No jaw pain, or headaches, or mouth sores, or nausea, and he still has the fuzz on his head. (Alex is getting quite annoyed with me, rubbing his head all the time). Part of me is grateful for his lack of serious symptoms, but another part of me worries that we must not be treating him hard enough...I feel so guilty for wanting to see my son feeling sick, but with no outward signs of what we have been doing to his body, I worry.

We got a visit from a representative of the Nick Wilson Charitable Group who came by with goodies for Alex, and some gift-cards for us. They explained how they can help us with a $1,500 grant to use towards our family expenses. What a wonderful organization...another of many who are actively supporting us through this newest challenge.

Bedtime went without a hitch. Another day down, we are getting close to his transplant day - a new birthday!

Update Soon

I am just too tired this evening... I will update you all in the morning. I only had three hours of sleep last night.

Day Minus 5

Today, radiation came early... both Alex and I were exhausted, and were barely awake when the transportation gurney arrived to take us to LINAC 1. Alex decided to try a Scooby Doo video that he hadn't already seen (imagine that!). Half way through the first 10 minutes, the video froze, and Alex had to just sit there still as possible until that side was "done". As always, he was a champ.

The second side was uneventful, and we came back up to 10 South without any problems.

School started soon after we returned, and Alex worked with the teacher while I got a 25 minute chair massage from a massage therapist who volunteers up every other Thursday to work on the children's caregivers. Unfortunately, today was the day Eric decided to head into the office for work - I don't think he will make that same mistake again. The generosity of the volunteers and organizations to support our family and others is truly amazing. I am humbled by their selfless acts to families who are struggling under the weight of a cancer diagnosis.

All Alex has wanted to eat today is Cheerios, and so far, he has consumed 5 boxes of them (the individual size) with milk.

After school and Cheerios, Alex and I went to work on his plan for the door to his room. I will post a picture of the final product - five points to whoever can guess what it will be *smile*

The 3pm hour came quickly, and Alex bounced onto the gurney, and played a game with his iPhone on the way to LINAC 1. Ghostbusters 2 was the video of choice, and after maneuvering him into position, we started the movie, and closed the vault door. One of the technicians told me that he was starting to fall asleep. When the lead and concrete monolith slid open at the mid-point, Alex asked to have his head taped, so that he could close his eyes. When his treatment was complete, he was totally asleep.



He woke up long enough to get down from the chair, and back on to the transportation gurney. Once his head hit the cushion, he was out again.



It took about a half an hour for an authorized transporter to come and wheel us back to the room. Two staff lifted him off the gurney onto his bed, where he continues to sleep. He is warm to the touch, although he doesn't have a fever. He is essentially getting a sunburn all over. His lips are starting to chap, and the doctors are surprised he hasn't started throwing up yet.

To help reduce mouth sores, we have this nasty-tasting mouthwash he has to use 4 times a day. We are going through it quick, since he is making us wash our mouths out with it too. He is swallowing pills the size of a dime, and is giving advise for pill swallowing to his fellow classmates.

I am so anxious not to let him fall behind in school, and am worried that soon he won't feel well enough to "go" there. The teachers will come to his bedside, which is wonderful. I guess I should probably get off of the blog and contact them about how to set that up.

For those of you who have read this far, and feel a connection with Alex, you may wonder what you can do for him. I have some suggestions.

1. Donate to the Leukemia and Lymphoma Society Warriors 4 Alex team (click the link to take you to the page). The cure for his Lymphoma CAUSED this cancer. We NEED a better cure. LLS has been instrumental in funding research to help find a cure for blood cancer. It is an organization that Eric and I are passionate about. Feel free to join our team, and walk with us on October 1st in Portland. Alex is the honored hero this year, and because of his transplant won't be able to attend. Walk with us for Alex.

2. Sign up to be a bone marrow donor. Alex's bone marrow donor is on the other side of the world. Someone we don't know, whose simple cheek swab set in motion the events that are happening now. She is saving Alex's life. Check out the website, to see if you qualify. You can save a life.

3. Donate blood at your local blood bank. Here is the link to the American Red Cross. Alex will need a whole lot of transfusions once this radiation and chemo wipe out his marrow. While your donation may not go directly to him, just one pint of blood can save 3 other lives.

4. Donate to the Children's Cancer Association. They have provided so much joy to our family - from a trip to the Caring Cabin, to our amazing Chemo Pal, Reid (and Taylor too)! In fact, they are doing a raffle for a Mini Cooper. My mom and step-dad won the raffle last year! Tickets are only $35.

5. Donate to Candlelighters. They have provided us with meals, family camps, and support groups.

If you read through all of that, I would like to leave you with a meme going around Facebook right now.

"They ride tricycles in the hallway, not in the park. They know the name of treatments instead of their classmates. Their central lines have names. Nurses and doctors are part of their family. They think hair is overrated. Their laughter can make a heart melt. Their strength will make a grown person cry. If you've ever seen a kid fight cancer, it will change your life forever! September is Childhood Cancer Awareness Month."

Day Minus 6

Hip Hip Hooray! Alex's nose swab came back negative for the Rhino virus, so we were told "you are now free to move about the ward".

Alex was a champ with radiation both times today. It is amazing to see how high-tech all the equipment is, only to then watch them use a wood dowel, brass plates, and masking tape to calibrate the radiation.

I kid you not.

With lasers shining lights everywhere, they use the wood dowel (with sharpie pen markings)to line him up parallel to the linear accelerator (LINAC). Then, they turn off the lights, and use making tape to stick brass plates to the LINAC itself to shield part of the beam, in order to keep the radiation level the same for all areas of his body.

Just like yesterday, he sat perfectly still, watching his movie (Space Balls today). After about 10 minutes, the vault door opened, and we went in while they turned him around.

After his morning chemo, he ate eggs and bacon, and got ready for school. We went to the classroom, where he worked on a diorama of the earth surfaces (lakes, rivers, planes, islands, mountains). I am so grateful for the school here. There is another little boy who is also in first grade, and is currently fighting T-Cell Lymphoma, *and* is left handed. When his Dad asked what Alex was here for, I cringed telling him that Alex was cured of his T-Cell Lymphoma, but then that cure caused the Pre-B Cell Leukemia. I sure hope that his little boy doesn't have the same thing happen to him.

Alex enjoyed school, and I really think it will be a great consistent stabilizing force through the next few months.



His Chemo Pal came by in time for BINGO, and Alex got a Porsche model car. Pokemon card games ensued, and laughter filled our room.

After his second radiation treatment, we came back to the room, and did some "homework".

After afternoon radiation, Eric headed home to celebrate his birthday with our daughter, and our parents.

Alex ate quite a bit of pizza for dinner, which is good, since he probably won't want to eat much, if at all, soon.

At bedtime, he said his jaw hurt (which is common for TBI - the salivary glands are especially sensitive to the radiation), so we got some medicine, and some ice packs, and drifted off to sleep.

Tomorrow, we get up, and do it all again...

Tired

Both Alex I are exhausted... I promise to update everyone about today in the morning... Good night.

Day Minus 7

Today, Alex's body was flooded with radiation - twice. It will happen again for the next three days.

The medical transport came to get him at 7:20am. Since we weren't sure how well he was going to do while conscious, the sedation team was standing by. This, of course, meant no food before the treatment.

Alex rode in a bed, and I walked beside him, as we traversed the barely navigable back halls of OHSU to get to the radiation center. We started on the 10th floor, then went to the 8th floor, then back up to the 10th floor, and then to the 4th floor.

Eric met us there after leaving Tessa in good hands with Grandma Diana back at the house. Two nice ladies (whose names I have forgotten), walked us into the room with the Linear Accelerator on one side, and a reclining chair on the other.



Alex sat so very still while the techs worked to get him lined up with the machine. His feet were bound, his body taped with radiation gauges embedded in brass. Pillows, towels, and sheets were folded, and wedged under different parts of his body so the machine would accurately wash his body with the same amount of radiation everywhere.



After he was strapped to the chair, and had his hands tapped down, a giant plexiglass screen was put between him and the machine.

I tried not to cry when it was time for us to leave. I was holding my own until the door closed. This door...wow...this door was 24 inches of lead and concrete - a two foot thick vault door. It slid closed silently, masking any sound of Alex, or the movie he was watching (Empire Strikes Back).

We were allowed a quick view of Alex on the video monitor, sitting as stoically as the picture above, then we were banished from the room, due to HIPPA laws (other patient info might be visible). After about 10 minutes, his first "side" was done, and we were allowed back into the chamber, and got to touch him and talk to him, while they arranged him for the second radiation blast.

The door quietly removed us from our son, and the radiation began again. All Eric and I could do is sit on the small brown bench next to that damn door, and listen to the faint sounds of Star Wars through the unseen monitor.

Alex was amazing...he IS amazing. He is my hero. He didn't feel the effects of the radiation right away, but as the day progressed, he started to complain of a headache. After his second round of TBI (Total Body Irradiation) this afternoon, the headache got bad enough that he asked for pain medicine. A dose of Oxycodon did the trick, and he napped for a few hours.

I napped right with him in his hospital bed, and felt the warmth of his face on my arm. When he woke up, we could see that his face is flushed (one of the side effects of TBI, along with headaches).

With a note from Alex's Chemo Pal that he was on his way, I kissed my boy goodnight, and headed for home to see my sweet girl, who misses her "brooder" so much.

Day Minus 8

We are here in the hospital, all checked in. We are a go for radiation at 8am tomorrow.

Since Alex tested positive for the Rhino cold virus, he had to endure another nose swab. Alex was kicking and screaming, and we needed another nurse to help hold him down, while the other nuse did the swab.

When she finished, Alex and I held each other and slowly stopped our tears.

More info tomorrow.

Alex and Tessa's Doctor's office

Alex knows way too much about the doctors office. If you ever wanted to be a fly on the wall at one of his clinic visits, this is what you would see.

Tessa is a very good patient, and Alex is a dead-ringer for the nurses.

Go To Hell

I have said it before, and I will say it again.

Go To Hell, cancer, GO TO HELL!

So, you decided to show your ugly face here again. You decided that 2 years of *hell* for our little boy just wasn't enough. You decided that you would use the cure from your first attack, to cause your second invasion. You decided that the poisons running through our son's veins, and bathing his brain weren't damaging enough.

You came back.

You picked the wrong kid.

Our resolve is strong, and our anger is real. How dare you come back, after we beat you into oblivion. How dare you show yourself by invading our son's bone marrow. How dare you steal this school year from him. How dare you threaten to kill him. How dare you show up on bone marrow smears under a microscope, mocking everyone who tries to obliterate you.

I have read up on you. I know so many of your secrets. I read your biography. I am asking others to read it too. Young children used to scream in agony as their bones shattered from the pressure of all the leukemic cells in their marrow. Can you hear them, back through time? Can you hear the parents weeping for their children?

Hear this now.

We have a perfect match volunteer donor somewhere on the other side of our planet. She is waiting for the call from our doctors to go have her hips punctured to harvest her marrow. That marrow will be shipped via special courier to our side of the planet, processed, and placed into Alex's body within 24 hours of the extraction.

We will prepare Alex's body for this life-saving transplant by irradiating his body twice a day, for four days straight. THEN, we will poison him to the brink of death with a Chemo that is a derivative of MUSTARD GAS. Yes cancer, we will poison our son, with both toxic chemicals, and with high-dose radiation, in order to wipe you out.

Alex is strong. He is aware of what you are doing to him. He is wise well beyond his years. He flushes his new Hickman Line just as well as the nurses. He is going into this with his eyes open.

He is only six years old. Damn you, cancer. Alex's body is riddled with scars we can see, and with scars we cannot. His body has had more procedures than most people have in their whole lifetime.

On the first day of school, while his friends walk into their new classroom, he will be walking into a lead box for radiation.

I know life isn't fair. I know life isn't supposed to be a bed of roses.

I also know that this "nuclear option", this bone marrow transplant will work.

Your days are numbered.

Start counting.

We are.

A New Plan

We are working on a new plan. It looks like Alex will be admitted in two weeks. A lot of the delay is the donor's schedule. I respect the reasons why, and I am so grateful to have a 10 point perfect match. I am just worried about loosing her, if she gets otherwise committed.

Of course, there was *absolutely* NO sign of a runny nose at all today. None. Sometimes it just feels like we are spinning our wheels.

Now I have to figure out what to do with my two monkeys at home for two weeks. We aren't going anywhere, and are limiting exposure to friends to as little as we can, just so we can keep him healthy for admission.

Outta Here

Getting ready to take the IV out....

Heart Beat

Alex's heart rate is low (we have seen this before). The anisthesiologist needs to see Alex when he wakes up, and we just heard that a trauma case just came in, and she is in an emergency...so, we wait...

Sleepy Boy

I am sitting next to my sleepy boy... He isn't awake yet. We are waiting for the chest x-ray to come back, before they release him...stay tuned!

Still Waiting

Alex is out of surgery. We still haven't seen him, but the doctor said everything went well. I don't think I will believe them until I see our brave boy.

Kisses

Eric and I just kissed Alex goodbye and watched him get wheeled away. I think what I am so upset about is how routine this has all become...

Angry

I was just informed, that it will be another hour... Now they don't even expect Alex to go into surgery until 6 pm...

Frustration

Surgery has been delayed for an extra 90 minutes. Alex is hungry... hasn't eaten anything since 7:30 this morning. Nothing seems to be going right today...

Delay

Today, we left our house in a limo, to check into the hospital. It was fun...the kids enjoyed the ride. Eric and I tried to be enthusiastic, but it was hard to be excited about pummeling our son's immune system into oblivion.

Unfortunately, a clear runny nose is keeping us from moving forward with the transplant.

Yep. A two week delay. So, we will come home after Alex's surgery today.

Monday

On Monday, at 11:00am, Alex will be admitted to the hospital to start his work-up, including radiation and chemo, to prepare for the bone marrow transplant on August 30th.

The preliminary reports on his bone marrow biopsy and spinal fluid show no evidence of leukemic cells. So, we are all a "go".

There is a whole lot more to tell, and I promise to post more, once we are settled in the hospital for our 4-8 week stay.

Warriors 4 Alex Apparel Alternate Link

For those who were having trouble downloading the order form, here is an alternate link which should open it directly to print.

Warriors 4 Alex Apparel Alternate Link

Thanks to all who have already placed their order!

Warriors 4 Alex Apparel

Many of you have been waiting for the announcement of the Warriors 4 Alex Apparel fundraiser for the Leukemia & Lymphoma Society.

Click on the link below to download the order form (as a PDF). Please make sure to send in your order by September 8, 2011.

Warriors 4 Alex Order Form

Select to download the order form. Then, just print the order form, and send a check to the address on the form! Easy!

This year, along with our previous offerings, we have Dri-Fit shirts for all our active friends and family. These shirts wick moisture away from the body, keeping you more comfortable while you are active.

Also, if anyone is interested in a baseball hat, please let me know. If we have enough interest, we may be able to order those as well.

Thank you for your support. All profits from the sale of these shirts go directly to the Leukemia and Lymphoma Society.

National Transplant Assistance Fund

Hello,

My name is Jim Trower and I am a great uncle to Alex Wilkison. I am sure you all are aware of little Alex's battle with T-Cell Lymphoma. He struggled with that disease for 2 years before he won that conflict. Unfortunately, one of the Chemo drugs he took induced genetic changes in his white blood cells. Six-year-old Alex is now facing a new battle with Lymphoblastic Leukemia. Cancer has given this little guy a one-two punch, and he is now waiting for a bone marrow transplant to overcome this newest medical struggle.

Putting emotions aside, what can we do for this family? Yes, they have medical insurance, but there are plenty of expenses that insurance will not cover. These extra expenditures amplify the hardship, not to mention the drain and anguish on Alex’s parents, Eric and Sara, who must still maintain and nurture the family, emotionally as well as financially.

There is an organization that helps with fundraising for transplant-related expenses. It is called the National Transplant Assistance Fund. I became familiar with this organization 15 years ago when my friend was going through a similar medical crisis. We set up a Campaign Fund for him at NTAF so that friends and family could donate to help with his expenses. The fund was available to him for uninsured medical and prescription costs, parking, travel expenses, caregiver costs, etc. I was very pleased with the way this organization operated, and it was a financial lifeline for my friend and his family.

We have now established a Campaign Fund in Alex’s honor at NTAF, for friends and family to help alleviate the financial burden that this young family is facing. NTAF keeps only 4 cents of each dollar and disburses funds only for transplant-related expenses thereby providing fiscal accountability to the donors. They have a 28 year track record and have received a prestigious four stars (highest rating) from Charity Navigator. All donations are tax-deductible to the full extent allowed by law. Please help.

Make checks payable to:
NTAF Northwest Bone Marrow Transplant Fund

Note in memo section:
In Honor of Alex Wilkison

Mail to:
NTAF
150 N. Radnor Chester Road, Suite F-120
Radnor, PA 19087

For secure credit card donations:
Go to the website
Call 800-642-8399 or click the "CONTRIBUTE NOW" button on the website.

Thank you so much for your prayers, good wishes and generosity,

Respectfully,

Jim Trower

Won't Back Down

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