Mitchell's 5th Birthday

Mitchell's 5th Birthday

Mitchell's 4th Birthday

Mitchell's 4th Birthday
February 2011
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Nov 2010

Mitchell's 3rd Birthday

Mitchell's 3rd Birthday
Feb 2010

Thursday, January 27, 2011

Jan 26, 2010

Aren't these kiddos the cutest!?! Radiation is over!!! Stent is out (kidney stones dissolved)! Can I be any happier or more excited? Yes! Mitchell crawled last night all by himself for a good distance! Physical Therapists are amazed at his progress. I am so grateful for today. I don't know what tomorrow will bring, but grateful for today.

On a completely different VAIN note: I've really aged in the last two months! I looked in the mirror as I exercised last night and barely recognized myself. Now I understand how our US presidents age so quickly in office. Stress does a number! :)

Monday, January 24, 2011

Jan 24, 2011

We're getting ready to wrap up our time here in Seattle. Mitchell's last day of radiation is Wednesday and depending on appointment times we should be home Thursday or Friday. The time has surprisingly flown by these last two months and although we look forward to going home and back to "real life," we have enjoyed this special time... with Mitchell. We pray it only gets better from here.

We've had some comments/questions that we thought we better clarify things a bit since I've given pieces at a time. Mitchell was diagnosed in November with a brainstem glioma. Typically brainstem gliomas are in the pons--the middle section of the brainstem/lower brain--and are high grade (III or IV) with a poor prognosis (10% survival). Mitchell's tumor is at the top of the brainstem in the midbrain where all the nerves come together. In this section, tumors are most often benign and have much better prognoses (65% survival). Mitchell's biopsy in November got enough sample to determine it is abnormal tissue--cancer--but not enough to grade the tumor. Because he had a MRI in April last year and another in November, the brain tumor team could see the rapidity of the tumor's progression (although they generally don't have those images to compare in other cases). Clearly from his symptoms, however, whether the tumor was high grade or low grade (benign) was irrelevant because Mitchell was severely ill and the tumor is in a terrible location. Because of that reason we pursued an aggressive treatment plan in hopes of stopping the tumor's growth (which, according to the doctors is all we should hope for). Even if the tumor is present, the brain can form alternate routes, etc. to compensate. This primary treatment (radiation) is a one time deal and will not be an option if the tumor grows back.

We are doing focal radiation through the University of Washington and go 5 days/week for a total of 30 days. In combination with radiation, Mitchell has taken temodar, an oral chemotherapy drug, in low doses. It optimizes the DNA breakdown of the cancer cells during radiation. Once this primary treatment is completed, he will get a 28 day break. Next we come back for a follow up MRI and begin a year of higher dosage temodar for 5 days each month by mouth at home. In addition to the temodar, our oncologist has recommended an additional bi-monthly combination of irinotecan (chemo) and bevacizumab (antibody) by IV , which means we will go to Seattle Children's for one day every two weeks. We are still considering the advantage to this additional therapy since there is no substantive evidence as it is in a Phase III trial.

So there are answers for those who are wondering. Mitchell will be doing a lot of PT/OT between Seattle and Children's Village in Yakima. He is improving every day. A couple days ago he woke up laying on his stomach and got up on all fours by himself! Chad has taken him swimming Friday night (after he gets his port-a-cath deaccessed) and Saturdays and he is using all four appendages wonderfully. He has made real progress and we are so proud of his efforts. We feel so hopeful. The other brainstem glioma patient at radiation (she has a DIPG in the pons) informed us of a natural medication called RUTA-6 shipped from India that from their research has shown real progress. A doctor at the NIH uses it with her DIPG patients. Our doctors here have given it out without real great success, but it's something I may try with him. I've also been reading about NUCCA chiropractors and may look more into that. Lots to think about and hope for! We are optimistic that Mitchell will continue to improve. He loves to say, "See! I'm getting better!" Our neuro-oncology nurse practitioner told us about a girl with a high grade glioma in the same place as Mitchell's who, six years later is a normal, symptom free teenager. The bottom line is we feel peace and hope in the future.

Jan 24, 2011

Update on Ashley Merrell: She begins round 2 of chemo tomorrow. She is looking really great! She makes a beautiful bald babe. She was running all over the place this weekend and even carried her feeding tube formula in a backpack. Joanna is set up with VTers here, and her in-laws were here to help for a few days. Ashley had influenza and a blood infection, so she's finishing up antibiotics.

Wednesday, January 19, 2011

Jan 18, 2010

Mitch is doing really well. He went swimming twice this weekend and is moving his left side more and more each day. He had tons of fun with his brother and seems to feel much better! Keep the faith!

Thursday, January 13, 2011

Jan 13, 2011

He loves PT! He's doing really well. I am too. I received (yet another) priesthood blessing with some very special messages about Mitchell and to me. Trust in God and believe. A message for us all.

We met another brainstem glioma family at radiation today w/a 6-yr-old little girl. In a way it was very comforting even though I get so sad for another family to go through this. They were very accepting and cheerful. A tender mercy of comfort and strength for me.

This whole process changes everything for me. Every day there are families everywhere going through these heartaches. Worse yet, there are people totally alone and suffering. After this, my intentions will become actions.

Tuesday, January 11, 2011

Jan 11, 2011

I spent forever typing an update yesterday on my itouch (the way I do all my updates), and the internet wouldn't work and everything got deleted. So this will be a simplified version.

Mitchell is doing really well. Last week he got his stitches out from his biopsy and EVD surgeries and is healing magnificently. The skin is thin from steroids and radiation, but eventually it will thicken up again. His brother came Thursday night with Grandpa and Grandma, which made him very excited, and a special visitor--Uncle Derek from PA--came too! Although we missed the rest of his family, it was a very fun visit. On Saturday his cousins, the Holts, came as well as Aunt Heather. It was a low key, fun weekend. Mitchell is steadily improving every day. His stability is SO much better, and his steps too. He can take a few steps by himself, and many steps lightly balancing on our hand. It is so great to see. We also worked on crawling with him and although his left arm is still a little weak, he was able to crawl well enough with help. If nothing else his confidence has grown again and it's fun to see him want to do everything he used to do. His silliness has returned, which is also fun to see. We love our little boy so, so incredibly much!

We had sacrament brought in Sunday, and after had a little family devotional. Mitchell of course chose, "I Am a Child of God," and then Uncle Derek shared some thoughts. Without sharing too much of his personal information/experience, he has a son who was born with a heart malformity and has experienced a lot of the pains and fears we are going through. One thought in particular was recently felt by me very distinctly, so I'll share my version. On the 1st of January when we took Mitchell in for his horrible kidney stone pain, there was a point when he looked up at us and begged to leave, and essentially for all of this to go away. Killer. As much as I wanted to grab him and run, I knew it was best for him to receive help at the hospital so in the end he would feel better. In that moment, I saw very clearly how much Heavenly Father must want to take away our pains and trials of this world, but also how much we need them to become who we need to be so that we can experience happiness for eternity. Derek also mentioned Mosiah 23:21-22, which talks about patience and faith. If the Lord fulfilled our desires and wishes now, would we grow? It's easy to be faithful for a short while, but difficult to be continually tried again and again.

I received some links in an email yesterday for some webistes of other children with brainstem gliomas, and unfortunately these sweet angels had all passed away. Great families and beautiful children. Admittedly it took the wind out of my sails. Despite statistics, Chad reminds me that if the Lord's will is for Mitchell to live, his statistic is 100%. It is scary though and today I have been nervous. I took Mitchell to radiation without Chad today, and Mitch was looking up at the ceiling, which has a forest scene. Usually the anesthesiologist will tell us when she's inserting the propophol, but as I was looking at him, he closed his eyes and went limp. Do you see where my mind went? Anyhow, today I need some extra prayers for strength to be positive and keep the faith. Mitchell is a fighter and has already dealt with so much. If anyone can fight this ugly battle, then it's this special little angel.

On another note, there's another neuroblastoma family here now from Zillah. I HATE cancer!

Jan 11, 2011

While the internet is working thought I'd share another. This is from New Year's Eve. The Ronald McDonald house had a karaoke party, and Mitch and I sang "Mama Mia" by ABBA; one of his favorites. It was fun. One of the other houseguests took this and emailed it to me.

Jan 11, 2011

Just thought I'd share this. Very kind volunteers bring their dogs in for "pet therapy" for the children. We had a greyhound and this Alaskan Malamute named Juneau today. Mitchell loves talking with these animals. What a kind service!

We also got a visit from our friends the Waggonners. It's so fun to see friends.

Jan 11, 2011

Update on Ashley Merrell: feeling well mostly. She's keeping her NG tube in better now. She was discharged last Thursday and spent Friday and part of Saturday with her family here until one of the brothers got a fever. Sunday she lost all of her hair. Joanna said chunks came out in the tub. Last night they went back to the hospital because Ashley had a fever. They're coming home tonight. The drs think she has influenza. I think she has another week or so until the next round of chemo.

Thursday, January 6, 2011

Jan 6, 2011

Post-exercise picture. I feel much better now! Part of my stress was due to my OB/GYN shutting down recently and wondering who I would call for our yeast/thrush issue. I tried calling the office anyway, and got my midwife who prescribed meds for me and Eden, plus told me where she'll be practicing. Double yes!!!

Poop is...sue will eventually get resolved. Jackson didn't poop for a month when he was 5 mos old, so I should be used to it, but it still makes me nervous. Yes, I am only breastfeeding her for those who asked.

Kids' colds are yucky sounding, but fingers crossed we don't get any bacteria problems. Mitch is still going strong. His balance is improving as well as overall strength, which improves my optimism.

Sorry for the frustration sound-off. All in all I have so much to be grateful for, but occasionally get thrown off by hiccups. Thanks for the words of encouragement!

Jan 5, 2011

Eden hasn't pooped in a week, and a week before that too. The dairy seems to help w/ blood in stool though. I'm 99.9% sure she has thrush. Both kids have bad colds now, which has greatly lowered M's blood count=dangerous for bacterial infection. Feeling overwhelmed.

Monday, January 3, 2011

Jan 2, 2011

At the Seattle Aquarium yesterday touching the sea stars and urchins. We had a really fun weekend with Chad's family who came up for Chad's birthday. They got hotel rooms Friday night, so we had a really fun New Year's Eve party with yummy food and a little swimming. The boys had lots of fun. Before the hotel we ate dinner here at the RM house, and they had karaoke. Mitch loves "Mama Mia" by ABBA, so he and I sang that together. It was cute.

Saturday we went to the aquarium as I said, and the boys loved it. Mitch practically popped out of the stroller ready to walk, and did a great job walking around a little with help. He even went up and down a couple steps!

We came back for Chad's bday party, and after mixing the cake, Mitch said his tummy hurt, which he said earlier that week when we thought he maybe passed some kidney stones. After a few hours of increasingly intense pain (oxycotin wouldn't help), we took him to the ER. He vomited everywhere from the pain and looked terrible. His voice was shaky and despite his best efforts he was miserable. After some morphine, fluids, and urine that had white chunks in it, he felt better. We thought he passed the stones, but they did more ultrasounds today that showed a couple large stones (approximately 1cm in diameter) and that he had a lot of debris that was probably passing. They planned to put stents in Tuesday, but to avoid further pain and blockage they put them in today. He's on potassium citrate, which will hopefully dissolve them, and if not they'll laser them in a couple weeks. We had to put the stents in to avoid infection from build up. He walked from his bathroom to his bed at the hospital today holding onto his IV pole and very light support from me on his left side! We get the sacrament brought to us at the hospital, and today when they came, Mitchell went to grab a piece and Chad quickly reminded him, "Mitch, we can't eat until after we see the drs." Mitchell just smiled and pulled his hand back, folded his arms and sat reverently. He's such an angel.

Jackson left today to return to school. We'll miss him, but feel better knowing he's back in a routine instead of cramped up here all day. Mitchell has already said, "Let's go get Jackson."

The Merrells are still in the hospital. Ashley was in isolation for a day or so last week, and then had a fever Friday. Now they're waiting for her white blood cell counts to go up before getting released because they're at zero.

Sunday, January 2, 2011

Dec 31, 2010

Happy New Year! Hoping 2011 brings happiness and miracles to us all!

Mitchell is doing great! He's bending his bad leg again, and lifting his arm better. He looks great! We're pretty sure he passed some of his kidney stones this week, but overall a good week. Today we went to the zoo and tomorrow is Chad's 33rd, so we're having a family party.

We're optimistic and look forward to all this New Year will bring.