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.

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.

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.

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.

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.