~ Kick'n Chemo Butt ~

God is so good. Since the day that we found out Jairden has a liver cancer we have had people praying for us and God has blessed us more than we could ever ask for.

In the moments after Jairden was diagnosed, I closed my eyes, said a prayer, giving the entire situation over to the Lord and his will for our lives. Then, I  looked at the doctors and said, "What's next?". I believe that my prayer has allowed me focus solely on what Jairden's needs were/are/will be. There have been moments of tears and feeling overwhelmed, but those have been far and few between. Just enough for a healthy emotional outlet, but to be honest I think those feelings came from being overloaded with super scary information that wasn't helpful or even relevant to our situation. We were prepped for the worst possible outcome which I think was stupid. What you focus on grows. We have chosen to focus on all the positives, expecting the best case outcomes while knowing about the worst so that we have the tools to deal with those IF they should come.

I had peace when it came to Jairden's surgery. I was not anxious, fearful, or overwhelmed. I didn't like leaving my baby in the OR but let's be honest, who would?

When it came to discussing chemotherapy I was basically bombarded with worst case information, told that there were things that I need/would have to do, like antibiotics, vaccinations, g-tube...things like he WON'T eat, he WILL lose weight, he WILL lose his hearing, he WILL lose his hair, he WILL throw up and get sick, he WILL most likely end up with neuropothy, he WILL get constipated. It all scare the crap out of me and on top of it Jairden was suppose to start chemo less than two weeks after his surgery. I couldn't imagine this little boy, that have just been through a horrific 10 days, being able to recover enough to have his body attacked by chemotherapy. ( For the record, I don't believe that chemo is the best way to treat cancer, but I have no choice in how I want to treat my child because laws in the US have taken those rights away from me.)

Well, guess what? He is eating, more than he every has. He is not losing weight, even with all the activity and miles of hospital halls that we have raced up and down to stave off boredom. His hearing is prefect and he may lose a small amount of hi-frequency hearing but since most of his language skills are developed it shouldn't be that big of a deal. We won't know how much of his hair he will lose yet (he hasn't hit his lowest cell count days yet). He wasn't sick during his chemo treatments, he played the entire time. He hasn't had one issue with being constipated and I credit that to the fact that he is still breastfeeding, yeah for full term nursing. I believe his weight has stay put because he is also nursing at night, getting in extra calories (even though all but one of his doctors think that his nursing has no nutrition value because he is so old).

I believe that his breastfeeding and diet of whole traditional foods have also had a critical impact on how his little body has handle chemotherapy. We have an awesome integrative medicine team at the hospital that has help us. Massage, healing touch, essential oils, baltic amber, music... The nutritionist looks at me like I have three heads and they have no concepts of the importance of lacto-fermented foods, but that's okay, gives us a chance to educate. I am really hoping (but not holding my breath) that someone will take genuine notice of how good he is doing and want to find out the reasons why. The nutritional help offered is really terrible, standard SAD diet nutrition. It needs to change. Pop in the refrigerator is really, really sad.

Jairden's name means "the enlighten one" or "the enlightener".  I know that God has such amazing plans for this little boy. He has taught us so much already. Mostly that our minds really get in our way at times. He has no preconceived notions that chemotherapy is suppose to make him sick, so he isn't. His oncology doctor and nurses have said this many times, that little ones seem to do better because they have no clue that the medicines they are getting are suppose to make them feel cruddy.

So, we are focusing on the postive knowing what to do if the worst should come and relying on God to bless us. Again, thank you for all the prays and keep them coming, we have three more chemotherapy cycles to go.

I plan I doing another post on the specifics of Jairden's diet, the essential oils that we are using, and other healing methods that we are using.

~ The Words You Think You Will Never Hear ~

"Your son has a massive liver tumor"

On Thursday, August 25, our older boys were hitting golf balls in the field and our youngest son, Jairden, was shagging balls for them. J was accidentally hit in the stomach with a club. He seemed fine at first but with in a matter of minutes he was throwing up, the color was gone from his face, his lips were white, and his eyes were starting to flutter.

We rushed him to the local ER where they did a CT scan and saw bleeding in his abdomen. We were brought by life flight to Children's Hospital in Minneapolis and had two more CTs early Friday morning. The results: there was a bleed but the bleeding was from the softball size tumor hanging off of his liver. His kidneys had been pushed so that they were smashed up against his spine, his bladder and spleen were smashed together on one side and his liver was pushed to the other side and twisted at a funny angle. The rest of his abdominal cavity was filled with this tumor.

We had to wait until Tuesday to do surgery to remove the tumor. It was a long wait for a little boy that was used to being outside and playing all of the time. In order to keep tabs on the bleeding he had to have his hematocit levels checked every twelve hours and his potassium/chloride checked every six. As any two year old, he didn't like being poked but sat perfectly still when they were doing it. When they checked his vitals he would lift his arm for the thermometer and hold out his leg for the blood pressure cuff. He wasn't sedated for any of his CT scans either. He had an IV the whole time but still gave us plenty of time to make it to the bathroom. The nurses were all very impressed at his helpfulness and the fact that he was potty trained.

The surgery on Tuesday couldn't have gone any smoother, they were able to get all of the tumor and clean out all the bad blood. Now we had to wait for pathology to come back. We knew before surgery that his tumor was most likely a hepatoblastoma, but need the tests to affirm it.

Wednesday was a very rough day. After surgery they left him of a respirator and sedated so that he could have some time to heal. He did great with waking up and getting the tube out but was very anxious the rest of the day. He had a feeding tube in his nose which was driving him absolutely bonkers. (Your stomach doesn't stop producing acid but the narcotics stop you bowels from working so the acid pools in your stomach. They had wanted to give him zantac but I wasn't okay with changing the pH and function of his stomach acid in any way. The only other option, a medication to simply coated his stomach, had to be delivered via feeding tube.)

We had a hard time getting on top of his pain. They finally increased his baseline levels and that helped a ton. They had talked about giving him an anti anxiety med but I wasn't for that either. He tried drinking some water and threw all of that back up along with all the crap that he was trying to cough up from his lungs. Getting him to cough was very hard too! Try talking a toddler with a four inch incision across his belly into coughing to bring up the mucus in his lungs.

He didn't sleep for about 36 hours after surgery even after we calmed his down. That night I slept with him and had pretty much pasted out from exhaustion. While I was sleeping the night nurse gave him he anti anxiety meds without my permission, I was NOT happy and it didn't help at all.

He has the most amazing massage therapists, Candace and Karen. One of them came everyday we stayed in the PICU and did cranial work, healing touch, and some massage. Late Thursday afternoon, Karen came down and told him a story and did healing touch, smoothing out the magnetic field around him. His dad read him a story and he fell asleep for the first time since his respirator tube was taking out on Wednesday morning. When he woke up, I smiled at him and said "Hey baby" and he smiled back at me with the most beautiful smile ever. It took everything I had not to cry, I didn't want him to think I was upset. He hadn't really smiled since the accident, he was just to confused and perplexed at what was going on.

He continued to improve and late Friday afternoon we were moved out of the PICU up to 7th floor. Sunday night we were able to come home. Our trip home is going to be rather short lived. We have to go back on Thursday to figure out what our exact chemo plan is and to start chemo. We will be there at least two day and then if we are okay we can go home.