Light the Night

http://pages.lightthenight.org/oswim/PortlndL12/warriors4alex

Alex was only three and a half years old when we were blindsided by the terrible news that he had Lymphoma. We battled the beast for two years with intensive Chemotherapy. We watched as our boy swelled with steroids, and withered with chemo. His hair fell out, and there were days he was in too much pain to walk. He learned the names of all his medicines, and could pronounce them better than we could. We believed our nightmare had ended in November of 2010, when we watched Alex take his last dose of chemo.

In April 2011, we celebrated Alex's sixth birthday at a waterpark, with many friends and family. I tried to tell myself that the night sweats and bruising I saw on his young body were just evidence of a great time at the waterpark. One week later we were in the hospital emergency room learning that Alex had cancer again. At first we were told it was a relapse of his original cancer. Two days later, we learned that the Chemotherapy he received during treatment caused a genetic mutation, and he had a completely different cancer. The CURE for his Lymphoma CAUSED his LEUKEMIA.

Now, as a very high-risk Leukemia patient, our only option was a bone marrow transplant. The search began for a match, and one was found on the other side of the planet. While we waited for all the pieces to fall into place, we began a chemo regimen, to hold the Leukemia at bay. In September, while his friends were getting on the school bus, Alex was wheeled down to the radiation room for "conditioning". No parent should ever have to watch as their child is tied down, placed in front of a massive radiation machine, and then separated by a two foot thick lead and concrete door. We watched through a grainy video feed, as our now six year old sat perfectly still, watching a Scooby Doo video on a tv with strange colors and distortions from the massive doses of radiation. We watched as Alex was poisoned with radiation to kill his immune system and be ready to accept the donor marrow.

Radiation sickness followed, with mouth sores, burned skin, vomiting and exhaustion. Alex's donor marrow was flown across the world, and within 24 hours of harvesting, we watched as the marrow dripped from the IV bag into his veins.

The road to recovery was long and hard, but we are now one year post transplant, and Alex shows no evidence of disease, and is back in school, catching up with his peers. He is leading a "normal" seven-year-old boy life.  We are profoundly grateful for the research that has helped our son battle cancer - TWICE. However, until the cure cannot cause the disease, we have much more work to do.

Please consider donating to our Leukemia and Lymphoma Society's Light the Night team: Warriors 4 Alex.

The cure isn't good enough - we must do better for our children, and other loved ones battling this horrid disease. Please donate TODAY

http://pages.lightthenight.org/oswim/PortlndL12/warriors4alex

100% DONE

CD3+: All cells (100%) had 2 X signals, reflecting the donor sex
chromosome complement.

CD33+: All cells (100%) had 2 X signals, reflecting the donor sex
chromosome complement.

This means Alex has 100% donor cells - it confirms that we are DONE, DONE, DONE!!!

One Year Later

Lymphoma: Done

Chemo: Done

Leukemia: Done

Chemo 2.0: Done

Radiation: Done

Bone Marrow Transplant: Done

Anti-Rejection Medications: Done

Antibiotics: Done

Antivirals: Done

One Year Post Transplant Bone Marrow Aspiration: Done

Cancer: DONE DONE DONE

I always asked myself, when I would end this blog - I just stopped writing a while ago, and just couldn't bring myself to write about how I was feeling.

I also had this irrational superstition that I would "jinx" his recovery if I wrote about how incredible his recovery has been.

We are now one year post-transplant. Today, Alex had a ton of blood drawn for the myriad of tests they do on this anniversary clinic visit. They check the thyroid, his hormones, his blood counts, his antibodies, his cholesterol, his genetic markers, you name it, they test it.

We will know the results in about a week. I will update with results as soon as I can. I hope to be viewing the monitor through tears of joy.

This has been such a long road - it is hard to think that it has been almost 4 years since this nightmare started. It is hard to believe that Alex is just a "normal" kid now.

We will still visit the clinic four times a year (every three months), and he will get an echo-cardiogram once a year. Alex is also being referred for a full neuro-psych test to get a base line of his cognitive skills, which will be very useful as we discover the full long-term effects of his treatment.

While we are DONE with cancer, I am not ready to close up the blog - I will update from time to time, as this story isn't really ever over, is it?

C-Diff Positive (Day +213)

Hip, Hip, Hooray!

Alex is C-Diff Positive

What?
Wait, I thought C-Diff was a bad thing?
Why are you so happy about a bacterial infection in his colon?

I am happy, because the reason for his "intestinal trouble" is NOT due to GVHD, and after a 10 day course of antibiotics, he should be just fine.

If the issue had been GVHD (Graft Vs. Host Disease) related, the doctors would have ordered a "scope" of his digestive tract, and he would have been put on steroids, and possibly immune-suppressants again.

So, hip hip hooray - Alex has something that can be treated without backsliding on his treatment.

All is good today! Happy Friday the 13th to all of you!

100% (Day +211)

In school, we know that most often, a grade of an "A" is bestowed on those with a score of 90-98%. And an A+ is usually reserved for those achieving over 99%.

I am SO happy to report that Alex has a *perfect* A+ score of 100% Chimerism! Which means, he has 100% donor cells!

He is still having some intestinal issues, so the doctors want to do a few tests to rule out a "stomach bug" before looking at possibly restarting some steroids, to reduce any GVHD that might be the culprit.

We are hoping for a stomach bug, and that Alex's body continues to "regenerate" into a healthy boy!

The New, New, New, New Normal (Day +197)

Normal = Life before cancer
New Normal = Life fighting T-Cell Lymphoma
New, New Normal = Life after Lymphoma
New, New, New Normal = Life fighting B-Cell Leukemia
New, New, New, New Normal = Our life now ... beyond cancer!

I know that posts have been few and far between. I guess our new x 4 normal (n4normal), is taking up all our time, as we find our balance.

Alex is now in school full days, with only a few adjustment issues. Once in a while, he will have an anxiety attack, but we are having more and more regular days. We had his first teacher conference, and were very pleased with his progress. He is learning so much, and we haven't seen any signs of possible cognitive issues, although, they could show up much later, so we will keep watching for anything.

We also made it through our first head cold with Alex. He got a fever, and were relieved when the on-call doctor told us to just give him Tylenol. No emergency room visit, no IV's, no overnight stays in the hospital. What has been truly amazing, is that Alex got over the fever, and cold faster than any of us. As one of his doctors say, he has a very robust immune system!

Alex only takes two medications now. The Acyclovir twice a day(anti-viral), and Septra twice a day on the weekends. Both of those medications are due to stop in September. He doesn't have any rashes, and only a bit of gastro-intestinal issues, which could just be from recovering from this cold. He looks so good, and you would never know he had been so sick, unless you saw 5 *war wound* scars that slash across his body.

We just had another clinic visit today. We are on a two-week schedule, soon to be once a month. His counts are perfect, and his blood work is beautiful. The whole clinic is just so pleased with his results. As are we.

This has been such a long road. It is hard sometimes to realize that we are at the end of treatment, and are moving into survivorship. Alex is amazing - and I can't wait to see what he will be when he grows up. But, for now, I am glad he just gets to be a kid.

I Can See Clearly Now ... (Day +142)

... the rain is gone.
I can see all obstacles in my way.
Gone are the dark clouds that had me blind
It's gonna be a bright, bright, bright sun shiny day ...

That is the song that has been running through my head for two days now. At Alex's last clinic appointment, the doctors released him from his low bacteria diet, confirmed his appointment to remove his Hickman line, and approved February 13th as Alex's first day back at school!

We went out to dinner to celebrate, and Alex's request? Sweet Tomatoes (a salad bar restaurant). While I must say, that my "germ radar" was on high alert, we made it through dinner, and really enjoyed ourselves! It may seem like such a small thing to most, but for Alex to have drinks from a fountain dispenser, and soft-serve ice cream is huge.

This news all hit exactly 9 months from the date of Alex's diagnosis of B-cell Leukemia. Since then, we have been to hell and back. I am just in awe that this stage is just about over, that life CAN go on.

I cannot give enough credit to Alex's team of doctors and researchers for working aggressively to kill this second cancer

I also send my heart-felt and most sincere thanks to the woman who donated her marrow so that Alex could have a chance to be the amazing man I know he will be! I hope to meet this amazing lady someday, although, how do you properly say "thank you" for saving Alex's life?

It is very fitting, that the sun is shinning in the middle of winter in the Northwest today.

Look all around, there is nothing but blue skies.
Look straight ahead there's nothing but blue skies ...

The Light Is Getting Brighter (Day +127)

We had another great clinic visit today! Alex's counts were where they expected them to be, AND the doctors have contacted surgery to remove his Hickman line! In a few weeks, he will have those pesky tubes removed from his body, and another potential source of infection will be removed from the equation.

The doctors gave us a taper schedule for Alex's Tacrolimus, and said that as soon as the Hickman is out, and he is on the next taper down (starting next week), he can GO BACK TO SCHOOL!!!!

Wow, just wow - this is amazing news. Alex is excited and nervous about re-entry into school, as are his parents. This road has been so tough, and the isolation so hard, that the thought that we may be coming to the end of this treatment is surreal.

We were still on a "high" from the Leukemia and Lymphoma Society "Mini Light the Night Walk" that was so generously put together for Alex the night before (pictures, and a separate post to follow tomorrow). So, this news was just the icing on the cake!

My heart is so full right now - my hope for a full recovery for our amazing warrior has not been this high in quite a while. I see the light at the end of the tunnel, and it is getting brighter!

Great Progress - Day +119

We had a great visit at the clinic today. Alex's results from his bone marrow aspiration and blood draws all show no evidence of leukemic cells, and over 98% donor cells!!!

This is tremendous - it is fantastic! Alex has made it past 100 days without having to be hospitalized. He has made it past day 100 without needing an antibody transfusion. Both of those things are almost a given with transplant patients.

Alex is strong. His energy level is great. He is eating normally. Now, if I can only get him to drink more (ugh).

The doctors are very happy with his progress, and are even talking about taking out his Hickman line in a few weeks! The benefits of having it (easy blood draws and iv hookup), are reducing compared to the risk of leaving it in (point of possible infection). Alex was such a trooper about getting poked in the arm for blood draws after he completed his lymphoma treatment. I know he would do just fine this time too. Plus, the phlebotomists at Doerenbecher are amazing and so quick; they make things as painless as possible.

The doctors are continuing to reduce his Tacrolimus level (the anti-rejection medication), and consequently, we are able to start reducing the number of magnesium horse pills taken each day as well! His Septra (preventative for a specific pneumonia strain) will continue on the weekends until 3 months after we stop the Tacrolimus. The Acyclovir (preventative anti-viral) will continue until one year post tarnasplant.

If Alex tolerates this reduction in his Tacrolimus level and continues on the path he is on right now, he may be able to go back to school in March! He has been doing really well with his tutor here at the house. While I know the transition back to the classroom will be emotionally difficult (shyness); his academic skills will place him on track with his peers.

His hair is really growing back quickly, and any puffiness left from treatment is gone. He continues to grow taller by the minute, and I am just stunned that we will be celebrating his seventh birthday in April.

I know Alex is going to make a full recovery, and with few long term side effects. He is an amazing Warrior, and I am so proud of him!

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!

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