Wednesday, August 29, 2012

7 Months After Chemo

7 months after Jackson's last Bone Marrow Transplant, and I am ecstatic to share our good news.  Jackson has officially been declared:

In Remission!!

I almost fell off my chair when the doctor actually said the word "remission" to us.  I didn't think we'd hear that word until Way WAY down the road.

Here we are, living our life like normal.

Normal.

I never thought we'd find it this way again.

Jackson started 1st grade this week.  Like a normal kid.  Happy.  Excited.  Nervous.  Normal.

He can run, jump and keep up with the other kids... he's just a little shorter.

Normal.

I never thought I'd want to be normal so badly.


But maybe normal isn't the right word.  Maybe I should use the word 'Extraordinary'.

Yes, that's it.

We are living an extraordinary life.

My son is extraordinary.

My son is an AT/RT Survivor.

Tuesday, June 12, 2012

Shhh.

I'm afraid to say it out loud, and yet at the same time, I want to shout it from the mountain tops.  Jackson's scans showed "NAD" or No Active Disease!!

I guess he's in remission.

We are finally where we've been trying to get for a year.

But I'm afraid to say it out loud... because what if that jinxes us?

Jackson's counts are finally coming back up.  He goes out in public with out a mask on now.  The only thing we have been waiting for is for Jackson's body to grow platelets so that we can get his central line out.  But- things there are looking up too... Jackson is scheduled for surgery this week (contingent upon his counts).

We feel so lucky.  So blessed.  So grateful.

But I'm still afraid to say it out loud.  In fact, I can't say it out loud with out getting teary eyed... my gratitude and joy just overwhelms me.

So, for those of you who have been waiting for an update... please feel free to celebrate with us!  But do it quietly, because I'm afraid if we all cheer too loudly that it'll jinx us- and we don't want to have to fight for Jacksons life again.

Monday, April 9, 2012

Returning Back to Normal

Over the last year I've longed for our old 'normal', for a while we were uprooted and thrown into the cancer world. We spent days and days at the hospital. We spent hours in doctors offices, and we spent several nights inpatient. We ate more cafeteria food than anything home made, and we struggled to keep our family together. We spent 93 days inpatient in the ICS unit in 2011... 93 days is an awfully long time. We struggled during each and every one of those 93 days and we often struggled in the other 272 days that we were lucky enough to be home. But now, we are finding our place again.

Returning back to normal has been so natural in some aspects, and in other aspects it has been such a struggle. Jackson is doing incredibly well. He is getting stronger each day, and he is so happy to be 'done'. We still have visits to the hospital, but only twice a month at this point. We don't know if the chemo worked, but we are hopeful, and prayerful, and optimistic.

Jackson's body has been through a lot, and although his hair has finally grown back, his body is still recovering from the extremely harsh bone marrow transplants that it received. Jackson's platelets are still extremely low at around 20...normal levels are between 150 and 450, but they have decided to not transfuse him until he either has extreme nose bleeds that will not stop, or until he gets to 10 or below. So far his body is making a few platelets here and there, but he is not recovering they way they expected him to recover.

After a bone marrow transplant, the doctors have certain guidelines and rules that each patient must follow closely for the first +100 days. Today Jackson is on day +86... we are so close to that day +100. Around day +100, they will allow Jackson to return to a normal diet again... which he can't wait! Of all the things he is DYING to eat, he is the most excited for....get this... Cafe Rio. Yep, I guess he is my son after all... even though he looks more and more like his Daddy every day.

Day +100 is a big deal. I am so excited for April 22nd!

As far as returning to 'normal', to be honest, it has been wonderful. I love that my boy is out riding his bike again. I love that he is playing and running and laughing. I love that he is alive... what a blessing in that alone.

I have recently been in touch with a new family from Texas that has a little boy that was recently diagnosed with ATRT. My heart goes out to them and their little guy. Reading emails back and forth from them has been difficult for me, because I remember all too clearly the emotions that I felt at Jackson's diagnosis. If you have time, you can check out their blog, and I'm sure they would appreciate any prayers you could send their way.

Monday, April 2, 2012

Make-A-Wish.... Granted!

After 5 long months of waiting, Jackson got his wish granted from Make-A-Wish. He got his go kart! He was finally healthy enough and out of the hospital, so he was able to have his big Wish Granting Party.

This windy day brought more joy to Jackson than he has experienced in several long months (perhaps even the last year). Jackson counted down for weeks and weeks until the big day came. Each day as we would get closer to the big day he would cross a day off of the calendar, and we'd talk about his go kart.



I don't mean to brag, but seriously, I think this kid's got some driving talent!


I do feel a bit of anxiety watching my little guy out there on the race track but I figure if he can battle cancer like a champ, he deserves to have a little fun too... right?

Thursday, March 1, 2012

Ring that Bell!

I finally uploaded the pictures from Jackson's big bell ringing day. It has been over a month, and watching the pictures rotate through as they uploaded to the computer, I found myself getting teary eyed. I worried that I had waited to long to blog about it. I worried that the emotions that I felt that day would have disappeared, or diminished, but they haven't. I still felt a wave of emotions flow over me as I experienced that day again through pictures.

We knew this day was coming. In fact, the first time I ever walked into the ICS unit, I saw the bell hanging on the wall, and it brought tears to my eyes then. It was a sad bell, and when I saw it, the thought of childhood cancer was still just a thought- not yet a reality. I saw a small bald boy playing in the area, and I cried for him, and his family. We had no idea what lay ahead of us. That first time I saw the bell was way back in June 2011.

As Jackson progressed along in his treatment, the bell stood in the ICS unit. We would walk past it several times a day, not really noticing it anymore. Often times we would hear people cheering while we sat in our room, and I would go out to investigate. Every single time I watched another child ring that bell, tears came to my eyes. Every. Single. Time.

I would see others ring the bell, and I would think about how lucky they were to be done with treatment. I would think about how relieved they must feel, and how happy they must be. I read another Cancer Mom's comment on Facebook that said that she was so excited to ring the bell- because that meant that her son could stop getting the nasty chemo that was making him so sick. She talked about how her son would get a tiny bit better between rounds of chemo, but then they would go back in the hospital again, and he would just get kicked in the butt again. She said that this time she was glad that he could get better, and not have to get sick again. I would read her comments, and feel so excited for when Jackson got to ring that bell, and be done with cancer!

I had no idea that I wouldn't feel the sense of relief that I expected to feel when he rang that bell. I thought we'd be "done" with cancer. I thought that all of our worries would be gone, and that life would magically go back to the 'normal' that it once was. Boy oh boy was I wrong!

When Jackson rang that bell, I had such different emotions than I thought I would. I felt relief- yes, but more than relief, I felt panic. Here they were, these doctors, who study and study different illnesses. These doctors have told us for the last 7 months how hard Jackson's type of tumor is to beat. I clearly remember the day that Dr. Afifiy told us that we do everything in our power to beat the cancer, but then we have to turn the rest over to a Higher Power. Finishing Jackson's treatments made me panic because now we've done all we can do to beat the cancer, and we're putting our faith in a Higher Power. What if it didn't work? What if we're stopping treatment at this point, and it didn't work? We have to wait a little over 3 months until Jackson gets his MRI scans to see how the tumor responded to all of that chemo and radiation, but over that 3+ months, we are doing nothing. What if the tumor grows while we aren't watching it?

I had a rush of emotions that day that Jackson rang the bell, I felt joy and triumph and pride. Incredible pride for our boy. Our boy that conquered some of the worst drugs on this planet. Our boy who faced incredible trials with strength and optimism. Our boy who is by far, stronger than either of his parents. Our boy who still amazes me with his strength.

I cried silent tears as he rang that bell. He was so excited to ring that bell, and had been looking forward to it all week- I am sure he was looking forward to it a lot longer than that week. Earlier that day, Jackson told me that he couldn't wait to ring the bell. I told him not to be shy when he rang the bell, and he assured me that he was really going to ring it good. He said "I'm gonna ring it good, because I only get to ring that bell once!"

And he did. He rang that bell good and long, and loud!



Jackson had lots of support that day. We had lots of family join us that day, they were all there to share tears together, and rejoice in Jackson's accomplishment. Not only was Jackson surrounded by family, but he was surrounded by lots of our favorite nurses, techs and even other chemo patients. I have never heard a group cheer so loud for another Chemo Bell Ringer- and I'm not just saying that. Jackson won the hearts of everyone in that ICS unit.



I made Jackson wear his Beads of Courage as he rang the bell. He wasn't so sure at first if he want to wear them, but he agreed, and I'm so glad he did. He earned every single one of those beads by enduring something awful, painful, or difficult. I am amazed at how many he has- over 7 strands of beads.

When he was done ringing the bell, he was anxious to get the beads off and then it was time for hugs. Lucky me, I got the first one!






















Even with all of the emotions of an uncertain future, Wednesday, January 25, 2012 was one of the best days of Jackson's cancer treatments.

It was a day our family has look forward to for a long time, and we made it! Jackson made it!



The plaque on the bell reads:

RING THIS BELL
THREE TIMES REAL WELL
IT'S TOLL TO CLEARLY SAY

MY TREATMENTS DONE
THIS COURSE IS RUN
NOW I AM ON MY WAY

Tuesday, February 28, 2012

Moving Forward

Jackson is moving forward and making progress which is exciting and wonderful!

The biggest thing that I am so happy to report is that we are all home under the same roof. We have been home for almost a month now, and I can't believe how fast time flies! Jackson did have to have an overnight stay at the hospital last week because he got a bag of platelets that were contaminated and had bacteria in them. So, as a precaution, the doctors wanted to watch him overnight just to make sure he'd be fine. He got several doses of IV antibiotics, but they sent him home the next day. Other than that little bump in the road, Jackson seems to be doing amazing.

At our last clinic visit I talked to the nutritionist about Jackson. I talk to her every week and I genuinely enjoy the time I get to spend with her. Last week she started Jackson on an appetite stimulant. We were hoping that he would start to eat, and then we could get him off of the TPN (IV Nutrition) that he has been on since the beginning of November. TPN is a good thing if your body is unable to eat, but Jackson should be able to eat, and eating is essentially better for your body. The good news is that the appetite stimulant is working! He is now eating, which is such a relief. He has eaten more this week than he has in the last 4 months combined. One day he ate an entire peanut butter and jelly sandwich, and yesterday he ate almost an entire can of chili. I think part of his eating can be credited to the appetite stimulant, and part of his motivation to eat comes from avoiding another NG tube. They told me that if he doesn't eat this week that they will put an NG tube back in- which was such an ordeal for Jackson and for me. I am glad he is eating now, what a relief!

Other exciting news is that Jackson's Wish from Make-A-Wish is getting closer to being granted. Right now we are scheduled for the big reveal in the middle of March. I'll post more info when it gets closer, because you are all invited to join us!

Monday, February 13, 2012

Remember us?

I feel like we've been on the cancer road for so long. Seriously, it is pretty normal now, and I'm afraid to say that we've adjusted to our 'new life'.

Things are a new normal now. We go to weekly clinic visits to check Jackson's blood levels. Usually Jackson gets a platelet transfusion each week, and we are at the hospital for only about 3 hours once a week. Brian has returned back to his job full time, which is such a blessing. Brian came home from work a few weeks ago and had a funny story to share with me. He said that a guy asked him for help, and Brian mentioned that he had an altered work schedule. The guy asked why, and Brian replied that Jackson was in the hospital. The guy replied "You're still dealing with that?"

Yup, we are still dealing with that.

Remember us? The people that had a kid with cancer? Yup, we're still the people with the kid that has cancer. I feel like we've been on this cancer road for so long that people have forgotten that we are on a different road than the rest of the world.

Things have changed for us, and for our family. I know that I will never be the same. I have changed in so many ways, some happy and some sad. I've experienced things that I never wanted to or expected to experience. Brian and I have had to make hard decisions regarding Jackson's health, and it has been a very rough year.

I want to share a story here about something that Brian and I had a good laugh about. Some of you may not think it's funny, but take it for what it's worth.

I am pretty sure we will never eat at a buffet again. Jackson is currently on a low microbial diet. Basically he can not eat anything that may contain bacteria that could cause him to get sick. So, no restaurants, no fast food, no fountain drinks, no fresh fruits and vegetables, etc. Because of this we haven't eaten out for quite some time- he has been on this diet since his first bone marrow transplant, and will remain on the diet until at least the end of April. Brian and I went out for Brian's birthday dinner in January, and we chose to eat at one of Brian's favorite place Tucanos. Brian refers to Tucanos as "Meat Fest" because they bring big slabs of meat around to each table and slice you off a nice hunk of meat. It's all you can eat, and included in your meal is all you can eat access to an amazing salad bar. As we were at the restaurant, I told Brian that being a Bone Marrow Mama, I didn't know if I could eat there. We had an entire conversation over dinner about how we are so much more aware of germs now. I had Brian laughing when I explained that: "Those waiters, walk through a ginormous crowd carrying our food. Then the come to our table and slice it and we eat it. Not only that, but the salad bar!" I exclaimed. "Every one touches the same serving spoon, then they go back to their tables, and don't even sanitize their hands before they start eating!". Brian and I laughed about contaminated food, and how we shouldn't be eating there at all. Now, I am not saying that Tucanos is in any way a dirty, or nasty restaurant, but I laugh at our heightened awareness of germs. Seriously- if you have a normal immune system, having your meat carried through a crowd of people shouldn't be that big of a deal. But being a crazy Bone Marrow Mama, I freaked at what might have gotten on our food before it got to us.

So, to answer your question. Yes, we are still here. We are still on the "cancer path" and although we are through some of the more rough spots, we still have a LONG way to go. Jackson doesn't get any more official scans (MRI or CAT scan) until April. At that time we will see how his tumor responded to treatment. To be honest, I thought that when Jackson finished chemo that we'd be done with the world of childhood cancer. But here we are, he's done with chemo and we are still a long way from finished.

When Jackson finished his last round of Bone Marrow Transplant, I thought I'd feel relieved. "We are done!" But I didn't feel that relief. Instead I feel fear, and hope, and lots of faith. I am afraid that the chemo didn't work, and that they just stop treatment but don't run scans for months. I am afraid that the tumor will grow while the doctors are not watching it. I am afraid that he will relapse- or that the chemo didn't work at all. But at the same time, I am relieved that we are done with this part. I am grateful that he survived the harsh protocol, and that he is surviving and thriving. I am grateful that he is getting healthier every day, and that he has not had many of the harsh, horrible side effects that could have been. And above all, I have hope. I have hope that my boy will live a long, healthy, cancer free life.

Remember us? We're still here- on this road of childhood cancer. But we've found the beauty that this road of cancer can hold, and we're grateful that even through trials, we can survive and thrive.

Monday, February 6, 2012

Inpatient

What do most kids do when they are inpatient in the hospital? I'm afraid most kids lay in bed for days on end, they get bed sores from living a sedentary lifestyle. They watch TV, countless movies, and play video games. Some kids get so sick that they do nothing but sleep all day, and try to let their little bodies heal. Some kids ride bikes in the hall. Some kids have syringe water fights with their nurses. Some kids drive remote control cars with fart machines taped to them. Some kids make crafts.

We've been on both sides of the fence. Jackson has been that kid that laid in bed, so sick that he slept all day. Jackson has lost leg muscles and lung function because he didn't stay active enough. But thankfully more often than not, Jackson has also been the kid causing nurses to laugh. He has started many, many syringe water fights. He plays bowling, and basketball, he jumps on the bed, and plays hide-n-go seek in his tiny hospital room, and he drives remote control cars.

In fact, last week when Jackson was inpatient he drove his remote control truck over the nurses. Yep, they laid on the floor and allowed my son to drive right over the top of them. He LOVED it! And I thought I'd share it with you.


video video
video

Not everything about being at the hospital is horrible. Honestly we have come to LOVE the staff on the ICS unit. The staff has been so good to not only Jackson, but our entire family. The ICS unit has become home for us. Honestly, some of the coolest people we know are nurses!!

And, if we have to be stuck inpatient somewhere- there is nowhere else we'd rather be!

Thursday, January 19, 2012

Hope

I stood in the ICS Unit yesterday at the HUC desk. I was chatting with one of my favorite techs- Laura while Jackson was supposed to be taking a nap.

As Laura and I chatted we heard a bunch of happy greetings as some people entered the unit. There was a mom, a grandpa, and an amazing 3 year old little boy.

I don't know the boy's name, but someone whispered to me that that little boy once had AT/RT. I was in shock, and in awe of this little warrior. Ever since our diagnosis, we have never met or seen another person who had the same diagnosis as Jackson.

I wanted to approach that amazing mom and I wanted to ask her a million questions, but I could not even form a complete sentence. I just stood there, and watched this little boy. He is a survivor of the same cancer that is threatening my son's life. That tiny boy conquered the same dragon that Jackson is fighting right now. That tiny boy is my hero. And as I watched this hero running up and down the halls, I stood there and let the tears flow.

That little boy is an inspiration to me. He was hope. He was walking proof that there can be good from all of the bad we have experienced.

That little boy was hope.

I overheard the mom talk about his scans being "perfect". She mentioned that he will need hearing aids, glasses and growth hormones soon, but that he hasn't been on any medications for the last year and a half. She mentioned that he is just now learning to walk and talk.

That tiny little 3 year old boy, with a crooked smile was hope. He was proof and light. I felt honored by the fact that there was a survivor in my presence.

I wish I could have had the courage to talk to the mom. I wish I didn't cry just by watching this small boy. But there was something powerful that hit me when I saw another child that had the same diagnosis as Jackson- and that that child was thriving, and alive.

I know that we are not alone in the world of childhood cancer. I have met dozens of other families affected by childhood cancer, but I never knew how alone I felt because Jackson's cancer is so rare. There has been no one to talk to about protocols, or treatments. I have not been able to hear stories of triumph.

That little boy was hope. He was the connection I have been missing. He was proof that this fight can be won.

Tuesday, January 17, 2012

Day +4

Today is day +4 of Jacksons' third bone marrow transplant. Day +4 usually means his old bone marrow is completely dead, and the new bone marrow hasn't begun to grow yet. Day +4 means that he has no immune system. Day +4 also means that we've been in the hospital for 7 days now.
I have been meaning to blog, but to be honest, there hasn't been much time. I always thought that I would have plenty of time at the hospital, because what else is there to do at the hospital? But we are busy at the hospital. For the first 4 days Jackson had to shower 3 times a day to wash off the chemo drug that was seeping through his skin. We spent our time showering, and doing bandage/central line care- and of course playing. But the last 3 days at the hospital, we have simply been too busy playing.

Jackson feels great so far. He literally jumps on the bed for quite a while each day- which makes the nurses nervous, and is completely entertaining for me. We have been building roller coasters, racing remote control cars, playing games, having school lessons, and even making a paper mache' mountain. We have been very busy.






And amidst the busy, Jackson has been enduring lots of things that no kid should have to endure. He has gotten two extremely potent chemo drugs, that we are hoping will be the last chemo drugs that will ever have to enter his tiny body. He got his third bone marrow transplant. Third. And for those of you who don't know, let me tell you... three bone marrow transplants it A LOT. A bone marrow transplant is exhausting to your body, and to have three in a row is destructive to every system in your body.



From this point we wait. We wait for his body to begin to grow white blood cells again. We wait for his Neutrophil count to come back up. We wait and hope that he doesn't get sick.

I have so many emotions connected to this last round of chemo. Yes, it is our last round, and yes, according to Jackson's protocol, we should be 'finished' with treatment at this time. But we are still far from the end. Jackson still has a 100 day waiting period for his body to recover from this bone marrow transplant. And at that point the doctors will order another MRI to see how much (if any) the tumor has shrunk. They will closely watch Jackson for the next several years to make sure the tumor doesn't grow or change at all. And after a certain amount of time, if the tumor doesn't change in shape, size or color, they will declare Jackson in Remission. But that is a long way away, and there are still so many steps left to travel down this road.

I never thought we'd make it to this point, and it feels sort of surreal to have actually survived this far. Now, we just have to endure to the end.

Friday, January 6, 2012

Seven Hours

We spent seven hours today at the hospital. Jackson had a scheduled appointment for another kidney function test (called a GFR), and he also had blood and platelet transfusions.

Here is a picture of the GFR test and machine. Basically they inject some radioactive stuff into Jackson's IV and then take x-ray type pictures of his body as the stuff circulates through his body and into his kidneys. Then they draw blood one hour and three hours after the injection to see how well his kidneys are processing.

The test itself is easy, but the IV placement is not fun (not fun is an extreme understatement- I have to physically restrain him as they place the line and he screams bloody murder).




There were so many numbers at the hospital today. Getting platelets took almost two hours and then getting blood took almost three hours. We watched two movies at the hospital today. Jackson ate one Otter Pop and three gummy alligators. I spent five dollars in a Cafe Rio knock off hospital cafeteria salad. Jackson had his blood drawn five different times by three different people. We walked across the Rainbow Bridge to the University of Utah Hospital and back again six different times. Jackson weighed 20.5 kilos and was 110 cm tall. Jackson's platelets were 21, his ANC was 700 and his hemoglobin was 8.0. While getting blood, Jackson spiked a fever of 38.0, but it went back down so we didn't end up getting admitted (thank goodness)! Numbers, numbers and more numbers!

Seven hours at the hospital was exhausting. Jackson was so excited to be able to come home.



One more number for you: Jackson slept for 40 minutes on our drive home.

Thursday, January 5, 2012

He is so wise. Wise far beyond his years. The other day we were leaving the hospital after getting the bad news about his hearing. I had been explaining what our future may hold and Jackson got very quiet in the car. I asked him what he was thinking about and he responded and said: "I don't want to share them." I was confused. I asked him what he didn't want to share and he proceeded to tell me: "I have lots of thoughts Mama, some of them I will share and some I want to keep to myself." I was stunned and baffled by his response. I am brought to tears thinking about his profound statement. He is wise far beyond his six years. Maybe one day he will share his thoughts with me, but for now I am grateful that he will share his wisdom.

Wednesday, January 4, 2012

Bad and Good

Isn't it strange how sometimes in our lives when bad things happen- good things follow closely behind. Cancer- surely a bad thing but along with cancer came an amazing variety of blessings.

Blogging today is sort of surreal. Things have happened and somehow life has continued to move forward. Christmas at home was simple and quiet, but we felt lucky to be able to be at home. Being away from our extended family felt strange and so different, but next year should be 'normal' again- whatever 'normal' is. New Year's Eve was also spent at home. We sat around our table and played Candyland and Don't Break the Ice. We watched movies, and then at midnight watched Dick Clark (when did he get so freaky?) and the ball drop in NYC. Then we stood on the porch and watched the fireworks in our neighborhood. It was a calm way to bring in the new year and I loved being surrounded by my little family.

Bad and good. Unfortunately with chemotherapy bad and good walk hand in hand. We have had several doctors appointments the last few days, and unfortunately we have heard more 'bad' news than good. Bad news is upsetting, but I am trying to see the good that goes along with the bad. We went to the Audiology appointment to check on Jackson's hearing. Up until this point he has had no changes in his hearing due to the chemo, but this last round his hearing was significantly changed. The audiologist told me "Jackson has significant high-frequency hearing loss". I knew that this was always a possibility, but I didn't think it would actually become a reality. I struggled to fight back tears in the doctors office as she explained to me the extent of his permanent hearing loss. I did my best to be strong- and when Jackson asked me if I was going to cry I took a deep breath and we started looking at the hearing aids together. He was my strength- he is the one that made me feel okay with the loss of his hearing. He told me he doesn't care if he has to wear hearing aids- and then he joked that we can get hearing aids together because I have bad hearing too. He is such an incredible source of strength to me.

I explained to Jackson that he doesn't need hearing aids yet, but after the next round of chemo, he may have more hearing damage and he may need hearing aids at that time. I told him about one of his 'cancer buddies' Skyler and how Skyler has hearing aids- Jackson thought that was so cool that another kid his age has hearing aids. He loved looking at pictures on Skyler's blog of Skyler's hearing aids. He also thought it was cool that Grandma has hearing aids too. With the bad news of hearing loss, I find myself grasping and looking for good news and surprisingly I find good in strange places. The good comes with Jackson, he is an incredible source of strength, motivation and inspiration. The good comes from people we barely know- people that have walked this path of cancer before us- people like Skyler who make scary things feel manageable.

We got more bad news this week, this time it was about Jackson's kidney function. The chemo has reduced Jackson's kidney function by 50%. When I heard about the kidney function problems, I was shocked. Once again- I knew this was a possibility, but the part when it became a reality was overwhelming. My chest got tight, and I go into panic mode. This chemo is wonderful and horrible at the same time. It destroys otherwise healthy parts of my son, which is bad- but it also kills his tumor which is good. Good and Bad- together again. Good news is that Jackson can function normally on 50% of normal kidney function. Good news is that the kidney damage may not be permanent. Bad news is that if his kidney function does not get better in the next few days that they have to give Jackson a lower dose of Carboplatin (the kidney damaging, hearing loss causing, tumor killing chemo) and Jackson's chance of remission is decreased. Remission is always our goal. Good news is that we get 4 extra days at home hoping for his kidneys to heal a bit. Bad news is that if you space out his treatments too far his chance of remission decreases.

Good and Bad. Bad and Good. Up and down- it is like being on a roller coaster; happy at one point, but afraid of what is to come. Afraid of the unknown.

We are just trying to enjoy the good when it comes with the bad. We are grateful that the good helps cushion the blow of the bad. And hoping that there is more good in our future.