The prodigal son returns

Our prodigal son, Everett, returned to us yesterday. It took about 24 hours after stopping dexamethasone for him to be himself once again. When he is on this chemo he turns into quite the tyrant and his moods are all over the place. All of us missed our Big Easy...and we are excited to see him enjoying life rather than being at the mercy of it.

Our lives had become an after school special on why you should never take steroids. He had "roid rage" and it was making all of us stressed and weary.

Now, Ben has his brother to play with again and Ev is actually happy to be playing with him. They played for hours together this morning. It was like living a dream that I forgot was a possible reality.
I'm so glad that Ev will not be on that drug again in the foreseeable future.

We have 3 weeks and 3 days left of the delayed intensification phase and then we will enter into another realm that will change the pace of our lives again. Going to Riley once a month is hardly a believable thought for me. Last month we were there 7 days and prior to that we were living there for 10 days in a months time.

I am excited about the future, knowing that some of our hardest days are behind us. I packed up Christmas decorations today, the sun is shinning and I am ready for the New Year.

We did have a good Christmas. We were able to be at home and be with family...that was my goal and God willing, it happened. The boys enjoyed being little elves passing out presents and being snuck extra sweets. Yeah, I noticed those Snowmen Pez guys being refilled Nana. But, no worries, I too was one who snuck extra treats to them.

Christmas Eve...a prime example of Ev's mood swings. He refused to even look at me, he was mad that his picture was being taken (the real Ev would have made a silly face or danced for us). But that Captain America shield on his arm was not forced...he wore that for two days. Dexamethasone has nothing on Captain America!

This SpongeBob pillow is an example of many charitable donations given to Riley kids throughout the year. Toys seem to be so minor when faced with cancer, but I guarantee you they are not. 

A Christmas Miracle?!

This past Monday when I took Ev into clinic I was completely surprised when we got his counts back. His counts involve a litany of cells...white and red blood cells, hemoglobin, neutrophils, lymphocytes, monocytes and it goes on and on. Anyways, from these cells we get an absolute neutrophil count (ANC) and this tells us the strength of his immune system. His ANC was 4150! This is almost in a normal range. I stared at the number for awhile and then questioned the nurses (I had forgotten how to calculate the number, as I have relied on the strengths of those around me).

The number is accurate, of course. And, then it took me at least a day to process it. I am a rational person and this is not a rational situation. He was predicted to be close to 0 by Christmas Eve. And, if we were to look at how Ev responded last time with this mix of drugs, his counts came down. His counts actually went up from the week before while on meds that really wipe cells out. I am baffled.

One of our friends (who has recently beat breast cancer) said, "it's a Christmas miracle!"

So, maybe it is. We'll take it. I still have questions in the back of my mind, but Ev looks and feels good, so I am joyful. Eventually, the numbers will come back down (as they should), but this high count basically buys us time to be at home with friends and family for Christmas and gives a cushion in case he catches a bug.

As he runs down the hall I see his pink cheeks and I still think, "oh no, he has a fever!" But, in reality, he is the healthiest I have seen him in at least 7 months. Pink cheeks and no fever...it's beautiful!

Tomorrow we go back to Riley for more chemo shots. He has completed 6 out of 24 shots that will happen in December and January. He hates the shots, but the nurses are so kind and encouraging. The older kids that have them describe them as painful, so even though he can't tell us exactly, we know.

Thankfully, for Ev, it only takes a couple super hero band-aids and a handful of candy corn and he's back to being ok and playing. I marvel at how strong he is time after time, month after month.

So, Merry Christmas to us and Merry Christmas to all of you! We would not be as strong as we are without the love of all of you.

This Little Light of Mine

There are a handful of songs that we sing to Ev before bed. Mostly, Jeff and I will sing children's songs with an occasional song that we really like ourselves. One of the songs is "This Little Light of Mine." Ev will listen and enjoys my dynamics as I sing it, but Ben had a load of questions when I sang it to him the other night.

Often I change the words in stories or songs to fit what I, and we, as a family believe.  So, this particular song I changed to "don't let anyone blow it [the light] out". The original lyric I had learned is "don't let Satan blow it out". What is Satan to a kid? That is a loaded section for a kids song that I could talk for hours on. But, I wont do so now. (We try to avoid telling our kids about God in the Veggie Tales format, but some stories just can't be simplified...so they will wait).

So, Ben asks me what the song is about. Looking back, I think he wanted me to say someone's birthday. He probably thought the candle was on a cake and perhaps a little brother was trying to steal the thunder of blowing another's candle out.

I began telling him about a figurative light that can exist within a person that is used for good. Of course, yes, I lost him at the beginning. This was a conversation that fell flat, but someday it won't.

In thinking about this song, it almost brought me to tears. I can see a light in my boys that they are probable unaware of and that light gives me strength and joy like nothing else.

I feel that in dealing with Everett's cancer, Jeff and I are regaining a light that we lost. I am not even discussing a God vs. Satan issue as the song suggests, but a light being a passion and real desire for life.

I have feared death for most of my life, perhaps a little too much. But who I am, in conjunction with having a policeman as a father and seeing loved ones gone at a young age...I was always aware and feared it. Now, I don't.

I hope all of our years are many, but if I were to go tomorrow...I am at peace. The joy of this is that my life is becoming fuller than it has ever been. In the midst of our suffering and despair, I have found my light. I am a better person because of it, creating a better mother, wife and friend too.

What I have had no choice in facing is the truth that believing in God is not a promise that bad things will ignore us or that our life will never be without wants and perhaps some needs. God's promise is to be there with us through the pain and the suffering and to create something beautiful out of something He never wanted for us. It is wrong to think God is not on our side just because free will exists.

Delayed Intensification

Tomorrow Ev and I will go to Riley for an echo and more chemo. I'm so glad to be in this last intensive phase, but I am also a wreck as usual. As this day has approached my anxiety and stress levels have grown. I have to think constructively, rather than allow myself to break every dish and scare my children to death. I always want to break something, so I am starting to feel good that most of the house is intact and my children do not fear me. (Thankfully, I've found other ways to reduce stress. A blessing for me and my boys.)

Everett is doing well. He has rosy cheeks (without a fever) and is healing quickly after incurring all his bumps and bruises from being a super hero toddler. We've had a nice two-week break from being at the hospital and even though tomorrow will be a long day, it will be great to come back home when it's done.

If you were to see Ev right now, he seems perfectly healthy. This gives me such hope as my mind drifts toward the years ahead...wondering if there will ever be a relapse. I also find promise in his attitude and strength. He is such a fighter...internally and externally. We have to make sure that he doesn't use moves on his older brother. Ev can attack, and when he thinks he is Hulk or Captain America, look out!

So, for the next two months we will be in and out of Riley a lot. He will have at least 2 spinal taps, 24 shots, and at least 7 different chemo drugs. There will probably be a few delays sprinkled in there too.

I am so very grateful that our families are coming our way to see us this Christmas. We don't know how the holidays will shake out, but they will be here and that will make it merry for sure.

Making it

A week ago today, we finished our 4th round of high-dose methotrexate. Ev has one more chemo med to take this evening and then we are done with the interim maintenance phase. Being in the hospital so often these past 2 1/2 months left me feeling confused as to where to call home. Our desire is always to be at home, but the hospital has become familiar and with that comes a comfort. And, thankfully, the last two visits went smoothly.

Ev still thinks we will be going back any day now. As I get him dressed for the day, he tells me that he doesn't want to go to Riley. To my great joy, I have been able to tell him we are not and that we get to see family, take brother to school or go to the store. He will tell people that he gets poked at Riley, and that seems to be his greatest reason for not wanting to go. (As a mother, I can handle this fear of his and not be overwhelmed by it. A poke is so small on the scale of what he has and continues to go through.)

The other night, Jeff and I were asking the boys in which state they were born. Ben says, Vermont and Ev says, Riley's. It was a good laugh for all of us.

In a weeks time, we will begin the delayed intensification phase. This is the last big hit before the much longer maintenance phase. So, from the second week in December to the first week of February Everett's immune system will get annihilated (assumably). My goal is to do the best I can to keep him out of the hospital. When and if his ANC reaches the low digits or 0, there's nothing I can do.

I can't control any of this, but I can still do something about it. A confusing statement, but very accurate. So, we will figuratively board up our windows and doors and stay away from civilization as the Oncler from The Lorax did. But, please don't pity us for it, we are happy, alive and thankful for where we are and the victories that have been won. Ben will still go to school and we will still be able to see family.

So, we will see what comes of these next few months.

Ev was Captain America for the entirety of our last visit. This also means he slept in his hat/mask.

When we walk around the hospital, Ev has to wear his mask...there were so many people that recognized him as Captain America that when we got back to his room he didn't take it off for a couple hours. 

Always delays, but he's OK

Ev's immune system was not ready for last weeks round of chemo, so we got to have Halloween at home. Jeff and I took the boys around our neighborhood and they didn't have to work hard for a bag that was so full they could barely carry them. There are perks to a neighborhood with not many kids, but tons of adults wanting to be a part of the fun celebration of pretend play and yummies.

This past Tuesday we were admitted for Ev's 3rd round of methotrexate (etc.). He had a spinal tap that day as well, which left him with nausea...and a Spider-Man mask. He didn't even mind feeling sick...he was Spider-Man! The mask was either on top of his head or on his face for the rest of the day...

Ev's body is already clearing the chemo very well, which pleases mommy! And, apart from a few discomforts Ev has felt great and has been able to show off his super hero moves and his painting abilities. After this visit, we have one more round and then we will be on to the next phase, which promises to be a break in comparison to the last 5 months. 

I am so blessed and thankful that I get to be here with him the whole time (not every child has that luxury and it breaks my heart). Thank you to everyone who has helped make that possible!

Not alone

Ev watching the video clip of kids on the HEMOC floor of a different hospital sing and have fun to the song "Brave." He has already watched it four times in about an hour.

Children's Hospital in Minnesota "Brave" video

Halloween at Riley

Our camera has been out of commission for awhile. Honestly, it's almost worse than the camera on our phones. But, as I was trying to de-clutter our house today I came across the wretched camera. I looked at the last photos that were taken and they were of Everett's 2nd birthday party. I almost lost it...that healthy face, no presence of emotional or physical scars and a head full of shiny blonde hair. I stopped looking because I could remember the day well enough on my own. I also had to stop feeling sorry for Ev, myself and our whole family. We aren't at the mercy of this cancer and therefore can not feel sorry for ourselves. Even though the rippling effect of cancer can steal moments from us, we still work hard to get them back and find new ways and new moments.

Ev has successfully gone through the first half of his interim maintenance phase and I am thankful. It was not without issues and moments of concern, but he made it through. There were a couple of times  in the hospital that he told me he was sad. One of those times, I told him I was sad too and he told me that wasn't ok. He told me I had to be happy. So, I lied and told him I was and he was content. The silver lining in moments like this is that I do have the power to lift his spirits and that at times he will mention people who he thinks of as happy. He'll say, "Mommy, I'm going to be happy like daddy."

In a months time we will have two more scheduled admittances for high-dose methotrexate and vincristine. Also, in the next week he will get a new port (this was the root of the issues we've been having). So, Halloween will be at Riley and Ev wants to be Batman. Lets hope he doesn't break another line when he turns into Batman while attached to his fluids and meds. Kids...super heroes, were never meant to be tethered to anything and he reminds us regularly.

A few photos

Ben's pre-K teacher asked for a family photo...and we don't have any (oops!). So, I took some with my phone while at a favorite walking path of ours.  

Ev has not lost any more hair, but I did shave him pretty close so that we wouldn't have to deal with his hair while we are in and out of the hospital for the next month or two. The boy loves to swing.

Not lucky

I am fond of taking personality tests. So, when I saw a fun one on Facebook today, I took it and found that I am many things, but foremost, I am lucky. Well, crap...I guess I can't believe the description. First, I consider "lucky" to be on a message found in a fortune cookie and second, no, I am not.

Yes, I am aware that these descriptions hardly tell us the truth about ourselves, but I still get intrigued to see what people come up with.

Today has been rather unlucky for us...little things that by themselves are not so bad, but piled up...I am just glad today is over. A note to that...thanks to the Ronald McDonald house I was able to do a load of laundry (those boxes secured next to the cash registers at Mc D's...well the money helps in many ways, but now we smell good too).

We've been in the hospital for 5 days now. It was predicted that it would be 3-5days, so we aren't too far off. The part that messes with my sanity is that Ev's body was doing awesome at getting the methotrexate out of his system and then all of a sudden his body decided to slow and then chill out.

So, we have two blood tests a day to check on his levels and then he takes a med that helps build up good cells. This evening his fluids were bumped up, so a diaper change every hour is a realistic possibility.

The nurses had to re-access his port because the needle slipped out. His skin started to swell with fluid. Ev found it uncomfortable, but he wasn't in pain. And, even though he didn't want to deal with any of it...a Dum-Dum at the end seemed to make it all go away.

Hopefully by morning more of the chemo will be flushed out so we can go home and be a family again.

Interim phase: Round 1

We were admitted to Riley yesterday and we have 3 1/2 hours left of the 24 hrs. of methotrexate. The finish line is before us and he has done so well thus far. His body has needed a little bit of help to excrete the fluid/drug, but that is a typical occurrence in this situation.

Ev's body is being polluted with this drug to wipe out both good and bad cells and then we go in and rescue his good cells with another drug. So, once this 24hrs. is up, we will be working to get methotrexate out of his body. When this is achieved we get to go home (3-5 days).

I had prepared myself to help a sick upset child get through the day...all the while having to go through every article of clothing I brought as toxins pour from his body. But, alas, victory for now is ours!

Ev's ANC yesterday was in the 3,000s! It's great that we can see that the treatments are working as his body takes longer to rebuild, but does rebuild and does in a big way. Today, we can breath easier.

Loving air hockey and scoring on himself.

In our room with his favorite puzzle.

Tuesdays with ...Ev

"Tuesdays with Morrie" has frequented my mind when sitting down to write a post. Often it's simply the title that sticks with me, but not this week. In the book Morrie explains how he allows himself 10 minutes a day to mourn and feel sorry for himself and then he goes on with the day. When I read that years ago, I thought "wow, what a balanced man, he faces the reality of his situation and then he goes about living." Now, I'm not sure he was human at all. Turning your mind or emotions on and off like that is no simple task.

Recently, fears have infected many of my thoughts. It overwhelms me and makes time my enemy rather than a friend to enjoy. Maybe if Ev and I could have a good cry together that would help.

Regardless, Ev is doing well and continues to be strong. He has had fun playing at home and with family. And, we've been able to drop Ben off at school and see other friends too.

It is almost a shoe-in that we will start the next round of treatment this Tuesday. We have been sent home the past two Tuesdays because Everett's ANC has not been high enough. Both his platelets and white blood cells must hit a certain number for this next phase.

Please continue to pray for Everett. He is in remission, but his battle is far from over. There is still so much that he has to take on and serious effects and reactions that can occur. And, you might as well add his worried mother to the list too.

Another false start

Ev was scheduled to get a spinal tap and start two chemo meds today, but his body had other plans. His ANC is at a whopping 100, so there will be no chemo for a week in hopes that his body will rebuild.

Along with the distribution of one of the chemo meds is a hospital stay at least 4 days long. So, we just side stepped a hospital stay as well. That is, until next week. So, again, we will change our calendars and perhaps he will be done with this interim maintenance by Thanksgiving.

This craze of not knowing what tomorrow will bring is reflective in all of our lives. But, I believe with cancer and perhaps other illnesses, this is intensified. Rather than thinking in years, with cancer you think in days, weeks, or if you are fortunate enough, months.

I have gone from feeling that I can control almost everything in my life to realizing I must submit to what each day brings or be buried beneath it. I have gone from fearing and evading thoughts of death to embracing it and placing more importance on what I decide to do with the time that is before me. And because of this I feel more alive than I have in years.

I will no longer waste my time and energies. I am able now and who knows what tomorrow will bring.

Thank you for your continued thoughts and prayers. We value them all!

The bell

Earlier in the week, while we were at clinic, we heard a bell ring. A bell that would be rung by someones great-great grandma when calling everyone in for supper. The boys and I looked at each other, wondering what was going to happen next....was a costumed visitor going to come through the door? were more toys coming our way? Nope. It was better.

Another child was done with his/her treatment. We couldn't see who rang the bell, but we definitely heard it and what a wonderful noise it was. I started thinking about how long until Ev would ring it and if by chance he didn't want to do it that day how I was going to ring the crap out of that bell. I was starting to wonder if we could all take turns ringing it. Are there rules to using the bell?

Even though our struggle continues, what a blessing to hear that another child has made their way through, to an end we all hope for...to be cancer free.

Our victory for now is the fact that Ev is in remission and he is done with his shots! Twelve shots total in two weeks. I haven't even asked the doc if more shots are coming down the road. I don't even want to begin dreading them on Ev's behalf. I just want to focus on how awesome he did and that by his last round he was Hulk in my eyes.

I tell him that he is brave like Captain America and strong like Hulk. More often than not, he's pretty psyched with that idea and then there are times he doesn't care...he doesn't want to face his challenging moment. He doesn't want to be brave and he doesn't want to be strong, he just wants it to be over.

Even still, Ev has dealt with all of this so amazingly. He could get knocked down over and over and he'd still get back up. He has a beautiful spirit and he is truly becoming a super hero in my eyes.

Shots and hospital stays

Through the years, it seems I have morphed from waking up to an alarm clock to waking up when someone jumps on me or starts randomly talking about a new toy or a cartoon they want to watch. Ben is an early bird and has been my alarm clock for the past 4 (almost 5) years. So, I questioned whether I would actually wake up with him being gone (he spent the night at Grandpa and Grammy's). Ev almost always sleeps later than Ben minus maybe a handful of days. Thanks to Jeff, I was not only awake early enough to have a couple cups of coffee, I was also graciously woken.

Ev needed to be at the hospital today by 8 am, which I actually prefer as long as we aren't there for the whole day. We were in at 8 am and out by noon. It was nice to have a short visit. He got two chemo meds, one of which was a stand-in for PEG (the one he became allergic to). At the count of three, both his thighs were "poked" and he was pretty much done...for today. Tomorrow we will go back and he will get two shots again, and then 4 more days beyond until we are done with this particular drug (PEG replacement).

For those wondering how "1-2-3" can add up to 4 hours at the hospital...there's a lot of wait time, accessing his port, blood tests, urine tests, time to be monitored after being given a drug, and any other randomness that can occur.

His ANC was 812 today. His hemoglobin has dropped and so have his platelets. More transfusions might be on the horizon, but the human body is an uncertain thing...so we will see. And, he has a week to lay low (nothing but antibiotic and nausea meds).

In two weeks we will begin our next phase, Interim Maintenance. This phase is less intense, but will require us to be admitted to the hospital 4 times for about 4 days within a two month period. Yes, this means every two weeks we will be at Riley (hopefully for no more than 4 days at a time). This will start September 17. November 12 we will move on to yet another phase. And, with much anticipation by January 2014 our visits to the hospital should go down to once a month. Cheers to the New Year!

Tuesdays with Ev

Today we didn't have to go to clinic until noon. Ev received one IV chemo med and will continue to get the same at home for the next three days. Ben went with us this time because the visit was supposed to be short...and in fact, it was. It was great to have a short day at the hospital.

Next week we will be there three days, and the week after...three days. Ev will receive a shot with an alternate drug to PEG (the one that he had a severe allergic reaction to). It's easier and less traumatic for kids to receive PEG through their port, but that isn't possible for Ev and 10 percent of the other cancer patients at Riley. So, one shot three times a week for two weeks. Ev is really not gonna want to go to Riley...but, maybe he will surprise me and it won't be so bad. It's possible, but not likely.

In three weeks, we will be into the interim maintenance phase...I eagerly await the sentence. Will it be long with fewer visits? Or, will it be short with more visits? In truth, I don't care...each day that goes by is one more day closer to kicking this thing in the tail. 

No baldies here

When we first heard Ev had Leukemia, one of the thoughts that went through our minds was, "when will he loose his hair?" It was predicted that he would loose it within the first month, but now we are about 2 1/2 months in and he's still got it. A weird happening in his situation. His hair has thinned (and is very dry), but he's definitely in the minority when we go to clinic. 

His ability to keep his hair has helped me to pretend that some days are normal. I don't always look at him and say, "oh, my poor sick baby." And, it has led to people asking why he wears a mask in public. None of the questioners expecting me to say that cancer is his ailment. 

So, last Friday, I cut his hair. What an amazingly big job. I have always cut the boys hair so I have a system (and their hair grows the same, so it's the same thing for all). But this time, in order to get the job done, I had to do various yoga poses over Ev while he played in the tub. He tried to jerk away at first to protest, but eventually he calmed down enough that I at least had once less obstacle. Anyways, it ended up ok...and he kinda looks like a hipster now. Especially, in this photo...

We were all planning to shave our heads to support Ev in his fight against cancer, I guess we can put the clippers away. 

Choo-Choo room

Fortunately, yesterday was as uneventful as it was long. We left the house at 7:20am and didn't return until 6:15pm. Part of the that time was due to traffic, but none the less, it was a long day at the clinic. We got the "choo-choo room" again, which only means that Thomas is on the wall (a lone wall, in a room sectioned off by curtains).

I like that room because every time we are in it everything seems to go smoothly (I am becoming a bit superstitious). There is one room that I don't want to go back to because odds are stacked against us every time we are there. Some of the nurses know my feelings, and it's nice to be able to joke about it.

If we couldn't laugh at some of the moments in this chapter of our lives, I am certain we would explode, implode, or something else undesirable.

Ev's ANC was 1952 and so we were able to continue with his chemo therapy. He received two different drugs and tons of fluid to make sure one of them didn't do any unwanted harm. He did well and was exhausted by the time we left. He went to bed at 6:30pm.

He will have more chemo at home this week and next and then we will have another break and assumably another bone aspiration to see how his body is responding. I am looking forward to the next phase because my hope is that we won't be at the clinic as much and that he won't need as much chemo. We will see, none of this is predictable, not even by the doctors.

False start

We went to clinic yesterday prepared for a full day at the hospital, but ended up leaving after two hours. Ev's ANC was too low to handle the chemo that was to be given. So, we have another week off for his body to create more cells.

As a family, we have gone from a fairly routine life to one that can vary daily. After two months in to treatment, it seems to vary weekly. We are forced into an anti-rthyhm existence. We have to take each day at a time and not plan much further. And, we know that no matter what we plan it may not come about. In some ways, it's frustrating (for example, when others ask if you want to do something and you're not sure if you can, or if you are willing to leave Ev out of the action, again). It's hard not knowing where the finish line is. And, in other ways, an anti-rthyhm existence is helping to be in the moment and to enjoy more of it.

I wake up thankful that Ev is here with us and that he is fighting so wonderfully. I'm glad to be at home with the boys and glad to still be able to see friends and family. And, I'm glad that I can see how God is taking care of us. The rest are just details that don't amount to too much.

Another Tuesday

Last Tuesday Everett's hemoglobin (red blood cells that contain iron and carry oxygen) was low and he was on the fence in needing a transfusion. But, since he had a reaction to the PEG chemo our doctor didn't want to give him something else that might cause his body to react in a negative way. So all week we watched him closely. And, we made it to the next Tuesday without having an extra visit to the hospital (which means no extra pokes and no reason for increased anxiety on Ev's part).

When we went into clinic our nurse and doctor thought that Ev looked pretty good and above all his energy level was very high, so we started guessing what his hgb was. We were off, Ev somehow seems to maintain a high energy level regardless of a low hgb (or a low ANC...as shown last month). So, two things came to mind... 1) Ev is strong and even an illness won't mess with his fun and 2) how the hell am I going to know when he needs more blood when he acts great all the time?!

Yes, I do look at his color to evaluate him, but that's not as simple as it seems...it's not consistent and the only time Ev really looks like he has color in his lips or face is 24-48 hrs. after a transfusion. Of course, I verbalized this to our doc and he reassured me in a rational way (which is pretty much all I accept when it comes to all of this...because telling me, "it's gonna be okay" or "you'll know" doesn't cut it).

So, Ev got his last spinal tap (at least for awhile) and a less intense chemo med in addition to his blood transfusion. We were there for awhile, but Ev got to sleep a little and Ben stopped by to hang out with us.

Ben is a great older brother...he squirted hand sanitizer on his hands and was ready to help and figure out the clinic. I had wanted him to come so he could see what his brother has to go through and to better understand why he is usually with family or friends on this day. I've told him that we try to have fun there, but really all of us can't wait until its our time to leave and as Ev says, "I'm all done." Ben didn't get the picture...he was stoked about the orange popsicles he got and he even raised the roof to the nurses during their meeting and had them all laughing. Oh well, it was worth a try.

Next tuesday will be an even longer day with more drugs (at least no spinal tap). And, this week Ev doesn't have to take any chemo meds at home and barely any other meds, it will be a nice break.

For those in tune with his ANC, it was 780 last week and 850 this week.

Life is good...thank you!

Unintentionally, I sat down with a mug today that says, "Life is good." Thankfully, my first thought was..."it is pretty good." A few days ago, or after watching Hotel Rwanda or The Pianist, I would have laughed sarcastically at the mug and thought, "yeah right." 

The truth is that life is both good and bad. There are times when it breaks my heart and spirit to hear of one more person facing a life-threatening illness or just knowing that there are so many in need. And, then there are times when I'm overwhelmed by the beautiful love that people have and share with one another.  

Eventually, my thoughts went to all the people who have helped us in the past two months. Many of you have thought and prayed about us, sent meals or gift cards, sent care packages for Ev, bought Leukemia bracelets to show support, and I even had someone buy me dessert and another, a pedicure this past Monday. And, we can't forget a person who has been sleeping on our couch for the past two months, my mom. 

Regardless of how you have helped, you have and every bit has been beneficial to our happiness, needs and sanity. It's people like you that make us believe that "Life is good." I'm certain that we are one family of many that you have helped. And, with people like that...it's a joy to get up every morning. 

Thank you for all that you do! And, thank you that you took the time to share your love with us...we will never forget it!

It's not easy getting a happy photo of Ev...because he's usually a blur. 

He can't keep himself calm for a minute.

Today sucked

Today was clinic. I assumed two things; 1) that the visit would be longer than last week and 2) it would be uneventful since Ev has had the drugs before. It was the latter that proved to be false.

Everett made it through the spinal tap fine (only one more still to receive for the Consolidation phase). It was the PEG Asparaginase that caused him trouble. We are constantly being told about all the side effects that occur when a procedure is done or meds are given. Thankfully, Ev has not had very many severe reactions to the meds and we even have some preventative meds that he takes.

But today, his airways swelled along with his lips. It is unnerving seeing your child agitated and having no clue as to why. Typically this reaction occurs to teenagers more than toddlers. The last toddler that reacted the way Ev did (at Riley) was 3 years ago. Thankfully, we had nurses and our doctor by our side quickly as we were all watching him trying to figure out the reality of what was happening.

I can't say how much I appreciated that the nurses and doctors listened to what I had to say as they evaluated the situation. Even though I couldn't tell what was going on immediately, I could tell he was struggling to breath before his lips swelled and before he was hooked to monitors. Not to mention...toddlers need interpreters verbally too.

Ev just wanted it to stop, and so did we. The staff there today made me glad to be at Riley. Their eyes were on him just as mine were. And, after that suck moment, they came by to see how he was doing and they cheered for him when they saw him walk out about two hours later (excitedly carrying a new Avengers puzzle).

So, today sucked and I wish it hadn't happened...but it did and Ev is doing fine. As long as he gets back up, I can too. So, on we go. (And, yes, in about an hour I will cry my eyes out over this...because being a caregiver means that there are times when you have to hold it together due to the circumstance only to give into those emotions later so you don't blow up.)

We have 5 more weeks of the Consolidation phase and then we can move onto the Interim Maintenance phase. Please continue to pray for him. It is a blessing that his body is so responsive, but as many things in life...it is a fine line he walks with the negative reaction he had today.

I must add that our family has had some amazing days in between these clinic visits...great moments that have filled out hearts. Today was just a bad day.

Making the most out of this moment

Last Tuesday was the fastest clinic visit we have had so far. What a pleasant surprise for all of us. We left the hospital by noon with our headstrong, wobbly toddler attempting to lead the way.

At the end of our last two visits Ev has been determined that he is going to "run" out of the clinic and through the hospital. I really don't think he is so anxious to leave...I think he's anxious for his independence and freedom from his IV. The part that makes me reel him into my safety net is the fact that he still has drugs in his body that make him a bit off balance. The further along we get, again, in attacking his cells the more treacherous a fall. So, reluctantly and sometimes after a stand off, Ev decides to hold my hand while he "runs."

Ev continues to be a part of a study and, therefore, for the consolidation phase receives three drugs in his spine as opposed to one (the sedation for these spinal taps is what makes him wobbly). The study is trying to eliminate the amount of drugs that is necessary to cure the cancer. It's decided randomly, and Ev was selected to continue with what has already been proven to cure the cancer...he just might be receiving more than he needs. Thankfully, we are past the days of radiation for Leukemia patients which has been known to cause some developmental delays.

This was one of the easier decisions for us. I remember when they first asked us about participating, shortly after we found out he has Leukemia. The doc explained what information would be shared and how it would effect the treatment he received and so on. At that moment all I could think about was all the children that came before Everett and how they were saving his life. How many children were a part of a study to get to where we are today?  How many lives have been lost to this cancer? How many children died without anyone knowing what was going on inside of their bodies?

Ev's story has not been an easy one. He is only two years old and has experienced a lot. But, he is making it through and with more smiles so far than I could have imagined. I've always known him to be a strong boy, and my protector even when getting tickle attacked by Ben, and now I am amazed at the depth of his strength. God blessed us with a boy that has strength and a great sense of humor...I am excited to see what else come out of that little man as he grows.

Batman is so strong that he hasn't lost his hair yet.

Self proclaimed...Bucket Head.

Fishers...the true city of brotherly love. 

(It must also be said that Ben is quite the comedian as well)

Phase 2: Consolidation

I had built up the events of today in my mind before they had happened and before I knew their validity. Ev has been doing so well (acting like a normal healthy toddler) the past 2 1/2 weeks and I knew that today could change all that. I was trying to prepare myself for the reality rather than what I want. What I want day in and day out right now is not going to happen. Taking it step by step and owning up to what my life is right now (and what it means to all of us) is the most beneficial and ultimately, the most rewarding.

Today was long, we spent nine hours in the "hemoc" clinic at Riley's. Ev was brave and strong. He received three chemo meds in the spine and more chemo through IV, via his new port. He had his moments of anxiety, fear and anger, but also he colored, laughed and even played with his doctor a bit. Usually Ev is quite reserved with the nurses and doctors, so the fact that he can see past the pokes and other owies is wonderful.

I suspect that Ev's energy and desire for playtime will lessen as we get deeper into this next phase. He had built his ANC to 2400 during his "vacation" (hemoglobin was normal and his platelets were building back up) and it showed in his behavior. Now it's time to attack the cells again.

For the next 57 days Ev will be taking a different regimen of meds. We will be going to Riley every Tuesday and hopefully not staying overnight (truly...there is no place like home). So, here we go again...

Victory Jacks for Ev

As the days have passed since Ev got his port our anxiety has increased to hear the news on how many Leukemia cells are still left to fight in his body. When the port was placed they also removed some bone marrow to test (the birthplace of red and white cells and platelets).

We finally got the phone call today, a call from our doctor that led us to do some victory jumping jacks. I have no idea why jumping jacks came to mind instead of a traditional victory dance. It just came out as I was trying to explain to Ben what was going on and how joyful I felt.

0% is what Ev's doctor told us. The Leukemia cells aren't there and the first round of treatment wasn't just a success, it was what we all hoped and prayed for. Out with the bad and in with the good.

When Ev saw our "victory jacks" he started running around with a balloon in excitement. When we finished, he said, "do it again." So, of course, we exercised some more.

What brings our victory jacks to a stop is not our lack of physical shape, but the fact that chemo therapy is not over. This is a process that will take time. The results are promising and with the full 2-3 years of attacking this cancer I feel much more positive about the end goal.

We will resume our visits to the clinic this Tuesday, July 16. Ev will get hit hard with chemo and his port will be accessed for the first time. There is anxiety again in this next stage, but at least this round we have the victory of the first battle in our minds.

Cheers to all of you who have thought and prayed for Everett!! This is a battle that cannot be fought alone.

Love all around

The photos below are just a small glimpse of the love and support we have had in the past month. 

These green (glow in the dark!) wrist bands were created by our friends at 

Fishers Point Community Church to raise awareness and funds for our family.

One of many drawings done for Everett by kids his age and older 

(I will post more of these soon...others are hanging on E's wall).

Ben drew this the other day. He told me that it showed he loved me a lot and 

that the rocks/circles are a path to that love. I almost lost it...I grabbed Ben 

and hugged him tighter than is comfortable. 

Home never looked so good

We have been home since Wednesday afternoon and it has been great. Ev didn't have a PICC line, an IV, or port for about 48 hours. Unhooked with no meds (other than pain meds as needed). He was a free man and feeling great. He has had two baths in two days at least an hour long each. It was bliss to see him enjoying what he did before.

Yesterday, we had a scheduled surgery appointment for a port. A port is the ideal method for receiving chemo because Ev can still function like a toddler and there is less chance of infection. The port is under his skin with an access point above his ribs in his chest. The port delivers meds close to his heart so that it can be pumped easily throughout his body. Also, chemo meds are too strong for some of our veins so the meds have to travel in a bigger, stronger vein.

It sounds horrible, doesn't it? But, to continue with a PICC line is not practical or safe for the long haul and we sure as hell aren't going to succumb to Leukemia...so a port sounds like a great plan. (In the next week we will know how the battle against Ev's ALL is shaking out and we will know the next round of therapy.)

The door to childhood has been opened and behind that door we have rediscovered play-doh, finger paints and water fun. Ev may not get to play in the dirt as he did, but right now he doesn't seem to care. He feels great and therefore we could not be happier.

A better celebration

I was prepared for the 4th of July to pass us just like the 2nd or the 3rd...just another day. Then one of the nurses told me that we might be able to go to the roof tomorrow to see the fireworks. That was an exciting thought and something I haven't done before. But, better than that we get to go home today. I was prepared to not have this chance until after Fridays procedure. Thanks to negative blood cultures (no presence of bacteria) so far, no fevers, and an ANC that is at 364...we are sitting pretty.

Happy 4th!!!!

Ev and Spidey

I think E was feeling pretty good last night to have a beach ball for a hat. 

(He also tackled his brother.)

Bed buddy Spider-Man is feeling better too.

Smiles and laughter please

Everett got his PICC line removed after spiking a fever and having more cultures drawn. The bacteria that had invaded him before invaded again. It is believed that somehow that infection got into his line and continued to infect him. So, it's out now and he has an IV until later in the week when we hope his body is ready for a port. A port can stay in the body for years and is an easier, less debilitating way for kids to be kids and still get their chemo meds.

Last night we decided to have Ev go to bed without morphine. He hasn't needed it during the day for awhile and is doing well. When you give liquid morphine it only takes about 20 minutes to kick in and usually he will start to toss and turn and we know that he needs it. Well, he needed it by 2 am. This time instead of just tossing and turning, he was upset. It broke my heart as I tried to hold him and comfort him and found it fruitless. Twenty-two long minutes later, he was relieved and asleep.

I have moments when I stop and think about what he has to go through...through his eyes. He isn't scared of the strong chemo drugs or the duration of this fight against Leukemia. He fears the "pokes" when they need to draw blood or place another IV. He fears being woken up at night, even if it's just to check his blood pressure or temp. It helps that I know he is safe when he is scared, but it breaks you down a bit when you see his face and hear his 2 year old words.

I talked briefly with a dad on the floor and he said that he was hoping to get his 20 month old daughter off the floor and on another level for a change in scenery, for a walk. But, she won't keep her mask on, which protects her weak immune system. He said, well she's happy doing laps in a wagon, so as long as she is smiling. And, that's the judge of my days as well. If Ev is smiling and playing, I don't really care what his numbers are for that day or whether we hit a bump in the road. Seeing his smiles and hearing his laugh creates the best days.

Home is where...

"Home is where the heart is" or "home is where you make it" as said in David Spade's Joe Dirt. Either way you might think of it, I have realized that they are both true. Though one is more endearing.

That said, our home will continue to be Riley until about July 5th. No one wants a hospital for a home, but it's not so bad. The only bit that really leaves me wanting is that Ben has to be somewhere else. Thankfully, our families continue to watch him, love on him and bring him by almost everyday. But, I really miss tucking him in at night.

Everett is doing great. These past few days our little guy has reemerged and we are excited to see it and laugh with him again. He has been coloring so much that the paper isn't enough for him and he eventually moves on to coloring his body. He always has liked coloring his own skin best.

A new style of bed head everyday.

Ev and Ben have had some time to hang out again.

My addiction is coffee, Everett's is mac and cheese.

Our new home

Yesterday, was a good day for Everett and was therefore a good day for us. I started to feel comfortable in a place I wanted to escape two days earlier. Living in a hospital is hardly ideal, but that is our new way of life for now and I am starting to learn it. We were fortunate to have had 10 days at home during induction (the first month of treatment).

The faces in the hallway are becoming familar. Ben has played with some patients/siblings in the playroom. A community is starting to form in a place that used to only bring anxiety, confusion, worry and a whole mess of other emotions that we want to move past.

I see some new faces to our floor (hematology/oncology) and have been able to give them pointers on which doors are for us and which are for staff. Everything seems like a confusing maze at first and then at some point, you get it.

Yesterday evening, I saw a mother holding her child in her lap on a bed being wheeled to a room on our floor. She had the look in her face that I'm sure I had when we first arrived. You can tell in the faces of those around you...who is trying to digest what they just learned and who has become familiar with the situation they are in. My heart sank when I saw the mother and child. Partly, remembering the way our hearts broke that night and how closely we came to loosing him, and then being so close to another's sorrow. Maybe I will see her today...I'll want to hug her, but that will really weird her out.

You would think that seeing a child go through what our child is going through would be easier for us because it's more familiar...but it's not. The good news, there are a lot of children being healed in this hospital. The bad news, we see a lot of those children or hear stories from their loved ones. Stories of a child being hit by a car, of a teenage boy giving us his chips in the infusion room after hearing our little one cry and beg for food, or watching a frustrated 5 year old girl cry and ask why while throwing her wig on the floor. It's a lot to bear. I will never forget these moments.

God never promised us an easy life, nor a life where we could have complete control. But, God is guiding through this time and helping me and others make it one day at a time. I am also getting quite a fire in my belly for my kid and others. I'm not one to sit still.

photos

Ev enjoying some time outside in his favorite shoes (about a week ago).

This was taken 1-2 months ago, but we added some fun to it.

Many thanks!

Everett's spirits are up today. It's easier to get him to play...to see his smile and hear his joyous laughter. (And this is before the blood transfusion, usually the energy surge comes after.)

Jeff and I are continually blessed by all of you reading this blog and those who's hearts are heavy with us. Thank you for all that you do. I know it probably feels like nothing or not enough, but it is. I think we all wish we could just wipe this illness away...the one thing we all want to do, but can't.

Thank you to all who care for our family...we are thankful and grateful beyond measure.

update 6/25/13

Everett is hanging in there...4 nights and 5 days later.

-The infection seems to have left his body, but he will continue to be on antibiotics for about 10 more days (this we can do at home).
-His fever is gone.
-He still has pains in his throat and stomach from sores he developed, which is very typical for chemo patients. This is the reason he still has needed morphine.
-He received platelets yesterday and will get red blood cells today.
-Not sure what his ANC number is today, but it continues to fluctuate. We want this to go up, so we can go home and Ev can get to playing again.

For those of you praying, please pray for Everett...from all that comes with the pains of cancer to his ability to still enjoy being a toddler. Thanks!

update 6/23/13

Good news...Everett's ANC is at 90 now!
Bad news...he is uncomfortable as we are still fighting the bacteria that invaded his body.
Good news...there's morphine for that.
Bad news...he has to be on morphine to be comfortable.
Good news...we all slept long last night (interrupted, but long).
Good news...Ev is going to get a cinnamon roll.

How long?

We will not be able to leave the hospital until...
1. Everett's ANC number goes up and shows that it is continuing to do so
2. His fever leaves and doesn't come back
3. His cultures come back negative (there is no virus or bacteria)

So, 48 hrs. in the hospital might now be the lucky or ideal scenario rather than the likely. Ev received some morphine not long ago and it's starting to work its magic. He is in need of some good sleep, last night was not an easy one.

Ev is awesome opossum

I complained about the stiff Lazy-Boy last night, and rightfully so. Fortunately, around midnight, Ev let me into bed with him. In the past I have been his bed buddy at the hospital, but for whatever reason last night he told me he wanted me to sit in the chair. So, I tried. I debate between allowing him the control of deciding and how much energy I will have the next day to help. It all worked out. After all, for a 2 year old independence and some control is important and he hasn't seen much of that in the past few weeks.

Everett has been so polite through this. Yes, the chemo drugs can make him moody. But, all things considered, everyone is surprised by his demeanor and I am proud. You know how it's said that character shines through in tough circumstances...is it possible to have such an awesome character at 2 years old!? 

He says "please", "thank you" and "no, thank you". The worst thing he has said is "no way" or "all done". I hope that he feels peace from God through this, as I do. I am certain that Willy Wonka, Spider-Man and Captain America have been a big help...along with chicken nuggets, chocolate milk, mac and cheese and "orange" chips.

Back at Riley

We're back at Riley for a few days. Everett had a 101.6 temp and his ANC bottomed out (so his immune system was out of commission). I have mixed emotions about being here. He needs to be here and we like it here, but I'm still mad that he has to be here. I'm mad that other kids have to be here too. What heart break to see what these kids have to fight through. I want to hug all of them and make it all go away.

Earlier today, there was a little boy, who already had lost his hair, standing outside of Ev's room with a smile on his face. The boy was not much more than 1 year old and was holding his own IV pole, more for support than anything else. I waved and attempted to talk to him, but he just wanted to watch us as his mom talked to the nurse. It was a moment of joy for me as I was still calming down from the worry of my own child.

Back in March, Everett woke up in the middle of the night having troubles breathing. Jeff was out of town, Ben was fast asleep and I heard this bizarre noise. Both my door and Ev's were shut, but I suppose because we live in a smaller home it was easier to hear. I've thanked God many times that I heard him that night. This wasn't his first time to struggle for breath, so we had a nebulizer and albuterol on hand. I gave him a treatment and brought him to my bed. He was fine the rest of the night. The next day we went to his pediatrician and she started him on a schedule of treatments to open up his pipes.

It was after this that I hit a brick wall and realized plainly that I cannot keep harm from my children. I have worked tirelessly to think above and beyond in order to protect them from both little to big injuries. I've always thought, if I can help...why not? And, I'm not saying that's wrong, but my prayers changed that night. I went from praying for circumstances to change to praying that God would help me to be there for them in dealing with the circumstances. So far, God has blessed me with this plea. I've also slept with our door open since then.

(Now for a 180)
For the past 17 days, I have wanted Ev's circumstance to change. I want out. Ev wants out. We all want out. I don't expect that feeling to change and that's ok. I'm mad that this is a battle Ev has to face. I'm mad that I have to watch him struggle through this in all its forms. I'm mad that I don't know when we will play together as a family again. I'm mad that I have to sleep is a sorry excuse for a Lazy-Boy tonight and still have it together tomorrow. And, everything I am mad about is legit...and it's ok because it's not the only feeling I have, nor is it consuming. I'm like a child throwing a tantrum...I'm not getting my way and I know I can't just erase Leukemia from his body. While being mad I am also a mix of other emotions and through it all I have peace. My peace comes from the fact that I know God is with us in this crap situation. I love God even though I am mad. And, I'm certain he gets it.

Clinic visit 2

Today was different than the last visit to the clinic. Everett needed platelets, but didn't have to get a spinal tap or a blood transfusion. We found out his ANC is 24...which freaked me out.

It makes sense that his ANC would go down before building back up, but I had a moment of "what the hell?!" With the help of our doctor and a few breaths later, I realized that this is what happens (hence the point of chemo), I just thought that Ev's ANC of 110 was pretty low last week. It only takes 500 to be severely neutropenic.

And this is why they educated us on caring for him at home. Not if, but most likely when Ev gets a fever of 100.5-101 it is vital that we call the doctor and get him to Riley. So, just as before, we are glad for the moments at home and will not take them for granted.

On the positive end, when they tested his blood today, they found no Leukemia (no mutated cells). This is a ray of light shining through the clouds. Now, we just have to wait for the clouds to get the hell out of the way so the sun can shine all over. By the end of the month when Ev has another bone marrow aspiration we will be able to know then how well the treatment was and what further battles we have ahead. This has been the longest month of our lives!

Hope comes in different forms

Everett has had more energy each day while being severely neutropenic (having a very low immune system). I am thrilled that he talks more and wants his freedom again. I expected him to be more sick as the chemo went on. But, apart from our Thursday clinic visits at Riley, his desire to walk and color is increasing. The past two Thursdays he has received a spinal tap with two different chemo drugs each time. His last visit he also received blood. Thankfully his blood type accepts all others. My count is off on the numbers of platelets and blood transfusions he's had...he was a very sick boy when he first made it to Riley.

Ev has been home 9 days now, which is a big blessing. I can't help but think that his response to the chemo and the days he's been home are due to the prayers said for him. Even though this situation sucks, we can't ignore the blessings that are happening around us. And, I don't want to ignore them either.

While I write this, Ben and I are enjoying the outdoors. We found some food outside the door waiting for us...a bag filled with a meal and tons of ice cubes. I just might be more thankful for the ice cubes right now as we smash them against the concrete and trees. For Ben, this is a great time of fun with mom. For me, I am trying to relieve some anger that I still have. Sorry, neighbors for the avocados you may have found in your yard last week...my aim apparently is not that great.

Hey Leukemia!

I don't know

Six days before Ev was diagnosed I had a conversation with my sister-in-law about how hard it must be to have a seriously sick child or one that was severely injured. We were beside ourselves with the thought of it and felt so fortunate that within our families there were no such tragedies.

Then Tuesday came and I kept thinking is this seriously happening? Am I dreaming? God, please wake me up! And then Wednesday we were given the concrete fact that Ev has Acute Lymphoblastic Leukemia (ALL). Jeff and I were asked some serious questions within 24 hours about the life of our child. Questions you never want to have to answer, questions I can't even write now.

So, how do we do it? Or, how have we gotten by so far? I don't know. I know that the love and support we have received from family, friends, co-workers, hospital staff and strangers has made us feel amazing. We don't feel alone or as scared when someone reaches out their hand, even if they don't know what to say. And, we have definitely felt the power of prayer and God's presence (I could write another post on this alone).

I don't know how we are making it, but we are...and I wish I knew how Ev was making it. He's tired and frustrated, but he continues to surprise me with his strength and resilience. Maybe it's all the chicken and chocolate milk he's consuming, or maybe it's the thousands of prayers that have been said for him.

I keep thinking of the ridiculous cartoon..."wind, earth, fire...with our powers combined, we are, captain planet." It's embarrassing that I even admitted that, but it's a good representation of what is going on. We can't all fight for Ev, but we can fight with him in many ways that will ultimately bring a larger, better result. So, each day, we all do what we can...and that seems to be enough. So, I guess that's how we are and will make it, one day at a time and trying our best.

My hero, SpiderMan

This was taken a few weeks ago, but he has been SpiderMan for quite a few months now. I call him my super hero all the time and he corrects me by saying that he is SpiderMan, not Captain America or Hulk, and definitely not a general term such as super hero.

Clinic visit 1

We had our first visit to the clinic today and it was exhausting to Jeff and me. So, you can imagine that Ev is tanked. We were at the hospital for almost 7 hours, which won't always be the case. This first month we are hitting this Leukemia hard. He is resting on his Nana now, getting tons of lovin'.

His ANC is still very low (which is to be expected), so we will have to continue to guard his immune system with all our might. It also means we could be back at the hospital at any point. In the meantime, Ev has been doing great with treatment and the docs are finding that the chromosome that is responsible for this mutation of cells in his body is one that is easier to attack. Thank God! Whew!

Ev has always been a strong boy and he has been proving it this past week. Good job Ev! And, thank you for all the prayers, we have much to be thankful for in this challenging time.

In time, hurt can be fuel for action

When we first heard the news, this photo was on my lock screen on my phone...it broke my heart to look at it. Today, this photo gives me hope and encouragement. We have valued and soaked up everyday we have had with our boys and we will continue to do so. Ev has always been a strong boy...Leukemia is gonna get a beat down.

The Beginning

It was on June 5, 2013 that we found out that Everett has Leukemia. It was a moment in time that Jeff and I will never forget. Fortunately, in the midst of blood tests and cuddling our sick boy, Everett's older brother, Ben, began singing and talking to the doctors and nurses. Ben came alive when the rest of us were falling apart. I'm thankful that Ben can't truly grasp what is happening. It enables him to be a ray of light when the rest of us need it.

We knew something was wrong with Ev about a month or so leading up to this, but nothing made sense with what we knew. Cancer was not on the radar. We went through common issues that kids have and nothing added up. Then, tiny red spots (petechiae) began to multiple on his legs and spread towards his belly and arms. He also was bruising very easily and was increasingly lethargic.

I talked with my sister-in-law who is a nurse and she had a suspicion in her mind, so she told me to go see our pediatrician. We did and our doc sent us to the nearest hospital for blood tests. From this point on we were just waiting for someone to tell us what was wrong so we could get started on healing this little boy. We were sent by ambulance to Riley Hospital for Children. More tests were given to provide a concrete diagnosis once we were there. It was also here that we almost lost Ev. He was anemic, his platelets were very low and he had a respiratory infection. I will spare any further details. We were thankful that he came around and proud that he fought the first fight so well.

We spent the next few days in ICU. But after the life changing news and horrific night, we have had a lot to be thankful and hopeful for; his respiratory infection was healed, he did well for the bone marrow aspiration, his response to chemo was great and we've been at home for 3 days now.

We are forever grateful and thankful for all the help, prayers and thoughts that have been sent our way. We could not have come this far without the help of others. Many people have asked how we have even managed to get through this past week...I'm not really certain myself. One day at a time and with love and support.