Heartbreaking...

I only know one family personally who is fighting Leukemia.  They have a sweet little 4 year old boy that they lovingly refer to as "Superman" because of how heroic he is with his battle against cancer.  Yesterday their worst fears came true - Austin has relapsed.  His Leukemia is back.  He needs a bone marrow transplant to make him better. 

I have been having a very difficult time since learning about this yesterday afternoon. This family is the only family I personally know who is fighting Leukemia like Channing. It hits too close to home and all the fears and anxieties from diagnosis are flooding back. I can only imagine a small piece of what this family is enduring right now.  I am coming to understand just how helpless people around me must have felt when Channing was diagnosed with Leukemia just last year. The only thing I can think of doing to help this family is by helping them find a match.

Please consider joining  www.bethematch.org. Please also share this link. We need more people willing to be donors. It costs NOTHING if you are between the ages of 18-44. It's easy - you review the info on the page and make sure you fit the medical criteria, then you submit your info. A kit will be sent to you to swab your cheeks with a q-tip and then if there is ever a match they will contact you to do further testing.  Look through the website to see if this is something you can do to help.

I know that it is a scary thing to think of the possibility of having to get bone marrow removed. My 5 year old son has had a bone marrow biopsy at least 3 times, and he gets needles inserted into his spine every 4 months - and he hasn't complained once about pain in his back.  If Channing can do this to save his own life, we can do it to save someone else's.  

Birthday Donation

For the boys 5th Birthday party instead of gifts we asked the guests to bring small non-gendered toys and games, arts and crafts kits, markers, playing cards, bubbles, puzzle books etc for the New Diagnosis bags for Badger Childhood Cancer Network.  These bags are given to families at Diagnosis to help lift the burden a bit.  There is information books on cancer, blankets, toiletries, and things to entertain the family during the hospital stay.  To me it felt like Christmas seeing all these new fun things in a bag for us while my son was in surgery getting his port placed, it was like a bright light in the midst of all the darkness. 

Only a portion of the generous donations from friends!

The boys dropping off the big bag of items at BCCN

BCCN was very appreciative of the boys and their friends donation.  I am grateful we were able to give back in a small way to an organization that has given our family so much support!

Pneumonia and Update

The Monday after Chan's neutropenic inpatient we went to do Chan's blood work to see if he was safe to be out in the world again.  We got his counts later that afternoon and he was back up in normal range.  I was excited because my mom was in town and we had lots of fun things planned.

Monday evening (Aug 20) we had an appointment scheduled with Wish Granters from Make a Wish (they coordination between the families and the local Make A Wish office).  They came with a box full of new fun toys for the kids.  The kids were sooo excited, it was like Christmas!!  It kept the kids (along with Grandma and Aunties help) entertained so the Granters could sit down with Channing and ask him what things he liked to do, eat, play, read, watch etc.  Channing was being shy and would only whisper the answers in my ear.  I noticed Chan was warm and was acting a little more lethargic them normal, but wanted to wait until the Wish Granters left before I checked his temperature.  Channing wants to meet Buzz Lightyear, Woody, The Pig, The Dinosaur, and Jesse Girl for his wish.  He asked to go to Disney World in May to meet them for his wish.

After the Granters left I checked Chan's temp and it was above the 100.5.  I called the on call Hem/Onc and we were once again sent to the local ER.  Jakob, and Grandma joined us.  Thankfully after Chan's last inpatient they gave us a few pediatric port needles so the local ER could do the port culture.  They accessed Chan's port and drew the blood and culture.  Then they took Chan to do an x-ray.  I figured it was normal procedure and that nothing would come of it.  Unfortunately, that was not the case.  There was haze on his chest x-ray and Chan had pneumonia.  They gave Chan some IV antibiotics, and were waiting to hear back from the on call Hem/Onc to see what they would like us to do.  I assumed, as did the ER Doc, that we were heading back up for another inpatient.  It was after midnight and I was exhausted and feeling defeated.

There have really only been a few times (after initial diagnosis/the first month) that I have felt defeated.  I felt defeated when Chan's first 2 inpatients were postponed.  I felt defeated when I was 9 months pregnant and Chan's last inpatient was postponed.  I felt defeated at his last inpatient when they said that we couldn't go home on Thurs (thankfully Chan's regular Doctor saved the day!).  (I guess most of my biggest feelings of defeat are based around an inpatient...).  But at midnight in the ER thinking we were going back up to Madison while my mom was here, and after just being inpatient the week before, I felt defeated.  There was nothing I could do about it, but I wasn't very happy about it.  I realized then that this is the way it was supposed to be during the first 6 months after diagnosis.  We were 'supposed' to have multiple unscheduled inpatients.  We were 'supposed' to be in and out of the ER with illness, and fevers.  Most children do.  The nurses still talk to me about how they can't believe that it all worked out with Channing's last inpatient and Ellery's birth.  For most its not like that.  For most children with cancer they are in and out of the hospital, in and out of the ER just waiting around every turn for something to change and force them to go back in.  We have been blessed.  We are the lucky ones.  I thought of the few little ones that I know with cancer and I know that they have dealt with that.  I sometimes feel like I live in this weird dimension.  I don't quite fit into the 'real world' but I don't quite fit into the 'cancer' world either.  Our experience has been nothing compared to a lot of kids with cancer.  Maybe its some sort of survivor guilt type thing, I don't know....

Anyway, enough of my tangent ;)  Around 1:00am the Doctor came and and she said that as long as I felt comfortable with it the Hem/Onc would let us take Channing home because his counts were good, and he looked so good for having pneumonia but if anything changed to call right back.  I was soooo grateful.  We got home around 2 am and were all pretty exhausted.  We took it pretty easy for the next 2 days.  I was afraid of making any plans for the next week because I was worried that Chan would spike a fever and we would be back to inpatient.  Thankfully, Channing seemed normal pretty much the next day and never did spike another fever.

At last weeks port flush and physical all signs of Chan's pneumonia were gone.  And Chan has been acting just fine!

And today.... Chan and Jakob started their first day of Kindergarten!!

I am worried about all the germs, that they won't wash their hands enough, and I'm worried about the fact that the boys are in different classrooms so more possible areas of contamination, but this is life.  This is what it should be.  My boys are growing and learning, and as much as I would like to keep them safe and isolated forever I can't.  Now, I get to have some time with Ema and Ellery every day (what are we going to do???).  It will be good for me and Ema to have some special one-on-one time!

Last Treatment and Neutropenic Fever

Two weeks ago (Aug 2nd) Chan had a pretty harsh treatment- a sedation for spinal chemo, VinCristine Chemo to his port, and he started Steroids (which comes with Miralax, and Ranitadine twice daily).  He hadn't had this harsh a treatment since almost exactly a year ago.  I was really stressed out about how Channing would respond to the treatment.  It didn't help that Kindt was out of town and I knew that I would have to take care of all the side effects on my own for a few days.  Treatment days always take a lot out of me, but this one even more so because it was the first time I had left Ellery for longer then a few hours.  And, Jakob spazed out when I dropped him off at my friends house because I forgot to put his lunch in his lunch box (I had his lunch, I just didn't bring it in his lunch box).  Channing did great as usual.  We left the house at 8:00am and got back at 5:30pm.  It had been a long day.  Channing only had some side effects (nausea, a little more tired then usual) and I was impressed by how well he did.

Fast forward to this last Saturday (Aug 11th).  I had been sick that morning, so Kindt had been taking care of the kids.  Chan came into my room for some snuggles in the afternoon and I noticed that he felt warm.  I took his temperature and it was 100.5.  Above the magic number 100.4 where we have to call his Doctor.  I called and spoke to the on call Hem/Onc and he wanted us to go to the ER and get a CBC and do a port culture, along with an IV antibiotic.  In the ER Chan's fever was at a 101.7, but his counts were all within normal range.  So we went home and he was fever free on Sunday and Monday.

Then around 2:00 am Tuesday morning Chan woke up saying he was going to throw up and his fever was back up.  I called Chan's nurse practitioner and filled her in on the situation.  She wanted to do a port culture through the port, and since no where around here has the needles to be able to do a pediatric port she asked if we would come up to them.  So we decided to make a family trip out of it, assuming that we were going to have a port culture and IV antibiotics and head home.

When they flushed Chan's port his fever spiked, which had them worried.  Likely, the bacteria was sitting in his port line and hit full force when flushed.  Also, they were worried that that would mean the port line was infected.  They informed us that we would have to be inpatient for at least 48 hours so they could make sure that nothing grew in the port culture during that time.  They also wanted Chan fever free for at least 24 hours.

Channing really wanted me to stay (he is very attached to me, last week he wrote a note saying "mommy never leave, daddy leave now, lol!).  So we made the decision that Kindt would go home with the other 3 kids and I would stay with Channing.  Before Kindt left I ran to the local store and bought a pump (so I could keep up my milk supply while away from Ellery) and a spare set of clothes for myself.  Kindt was going to come back up with the kids on Wednesday.

Channing had his last fever on Tuesday evening, and was already starting to look better and act more like himself.  

On Wed Kindt called and told me that Jakob had thrown up and had diarrhea, so coming up wasn't an option :(  I was very glad I had a spare set of clothes.  Channing and I spent the day playing in the playroom, playing on the computers, and playing games.  We got Chan's blood results back on Wed and the port culture was negative for bacteria, but his ANC was 483.  If that is below 500 then he is neutropenic.  The Wikipedia explanation of neutropenia is "Neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood. Hence, patients with neutropenia are more susceptible to bacterial infections".  Lots of handwashing, and if Chan left his room he had to wear a neutropenic mask - which thankfully he didn't mind.  

 Playing cars, with one of the Child Life Specialists.






Chan playing his ticket game (ABCmouse.com), which is one of the best educational computer games around!

 One of Chan's favorite things to do at the hospital is to take a bath in the big bath tub :)

During rounds on Thursday we found out that Chan's ANC had dropped 13 points to 470.  The floor Doctor and nurses thought it would be best for Chan to stay until his counts were going back up.  I was pretty bummed.  I called Kindt and let him know and asked he would come up in the afternoon with all the kids and switch me for the night.  A few hours later Chan's regular Hem/Onc came in and and the first thing she said was that we could go home today.  I told her that the Doctors at rounds wanted his levels to be rising before they let us leave, but she said Chan will be fine at home, just don't leave the house without him wearing a mask.  I was SOOOO happy.  I called Kindt and let him know that Dr. Patel said we could go home.  The whole family came up on Thursday and we were able to leave around 5pm.

On Monday we will go to Chan's PCP and get a blood draw to make sure that his ANC has gone above 500 so we can resume normal activities :)

 

It was nice to wake up this morning to all my babies.  Though it is always an adjustment for Channing to go without all the attention, and for the other kids and I to all be home.  And Ellery had finally starting sleeping through the night (about 12 hours)!!  I am grateful for such an amazing hospital and staff who take such good care of not only Channing but all of us.

We love Chan's hospital

Channing had a sedation with spinal chemo in May.  Amazingly enough, Channing rarely gets worried or upset about going to his hospital.  In fact at times he begs us to go their.  The staff is AMAZING at Chan's hospital and do so much to make Channing feel important, taken care of, and most importantly they take something that isn't so fun (getting chemo and pokes) and turn it into fun - which is why Chan loves it there so much. 

Here is Chan with nurse Abby.  She is amazing, and is our nurse every time we go to clinic.  We are always excited to see her!

After Clinic we went down to the Day Treatment Clinic to prep Channing for sedation.  It is usually an hour or 2 wait before Chan is sedated but it goes by pretty quickly.

On this particular day Chan's Day Treatment Nurse, Judy, and Chan got into a 'water' fight with nurse Judy and the sedation Doctor using syringes (don't worry they were filled with saline solution).  Channing LOVED it and thought it was soooo much fun. 

 I loved watching Channing hide inside the cupboard then pop out and shoot towards the Dr and nurse.  I don't think anyone even got wet, but Channing loved it, and that smile makes me smile :)

Happiness

This is my happiness. This is what makes me happy.  As I sat and watched my babies play outside I felt this immense feeling of love and happiness.   I wanted to remember this moment, remember my sweet babies playing outside together.

 

Then in a moment, a feeling of sadness came over me.  I watched these two boys, best friends in every way, play so happily together.  Play like there was no fears in their lives.  Yet I felt fearful.  I wondered what would have happened if the cancer had won - I imagined my sweet Channing being removed from these pictures and it broke my heart.  It wouldn't be the same without him,  Jakob wouldn't be the same.  We are blessed that our outcome is not that, but there are many children who are fighting the same cancer Channing has and aren't winning.  I felt this need rise within me to do everything I could to help children like my own son.  I struggle right now with wanting to do whatever I can to help, but it isn't the right season in life for me.  I need to focus on my babies and watch and enjoy them growing up.  I will still do what I can now to help fight the battle against Childhood Cancer, but for now I will look out my window and watch my babies play in happiness and be thankful that so many people are so willing to help in so many ways so that Channing could fight cancer and win.  We are blessed, we are the lucky ones.

Pre-Diagnosis Diagnosis

As I was organizing our important papers drawer I found the initial After Visit Summary when Chan was so sick right before we found out it was cancer.  The date on the paperwork reads 3/4/11, 5 days before our life changed forever.  On that day over a year ago I took Chan to his pediatrician and he was diagnosed with Strep Throat, Breathing Problem, Fever, and Tonsillitis.  Chans temperature was 103.8 *F, his pulse was 160 (normal is 80), and his respiration rate was 28 (normal is between 22-34).  My baby was very sick.  For the following 5 nights Channing slept in my bed with me.  Which is something my husband and I never do, our kids have hardly ever slept in bed with us but I was so afraid something was going to happen, I knew something was really wrong with my baby.  During the day Chan slept on my bed all day long- he barely moved, didn't talk, didn't eat or drink.  It was very difficult for me.  I remember going back to the pediatrician on Tues the 8th because Chan was getting worse.  The Dr. asked if maybe it could be Mononucleosis.  I remember praying, please don't be Mono, I can handle strep but not sure if I can handle my baby having Mono.  I think back on that prayer and chuckle a bit, if only I knew then what we were in for, I would have happily taken Mono :)