Ashley Merrell 12/28/10. The last couple days Joanna was not in her room, so the front desk wouldn't let me visit. Ashley was doing better on Tuesday. She finally kept in her NG tube for feedings. She's doing chemo. Her body scan revealed cancer in her legs/hips, face (the reason for black eyes), and on her skull. Joanna is a tough cookie. I am a way bigger whiner. She's here by herself. If anyone comes up to visit, she needs maternity clothes. She's due June 3rd. I'll keep updating on them.
Back to treatment. Mitch is fatigued but still smiling. He has tummy problems again, but we're wondering if it's kidney stones since he has regular BMs now. We hope it doesn't worsen and we can stay out of the hospital. He has an appt with urology tomorrow. I visited the Merrell family a couple times today. Ashley looks frail and pulls out her feeding tube. Her chemo started Friday. Keep them in your prayers.
What a wonderful day of relaxation, fun, and family. We were blessed with a trip home and have savored every minute. Now back to Ron McDon's house tomorrow after church thru the end of January. We were certainly spoiled with gifts from family and friends (thank you), but the best gift was what we took for granted every day--being in our love-filled home together.
Packard family came to visit and brought (among many things,) a stuffed dog that each child in the primary hugged! Such a sweet and thoughtful idea. We love our ward so much--yet another great blessing in our lives. Even in this yucky weather we've had lots of visitors along with cards and pckgs in the mail.
Out of the hospital again!!! We got Mitchell's colon cleaned out and are monitoring the kidney stones , which the urologists say look like sludge. (I think we've utilized almost every department at Seattle Children's now, especially when Jackson sees a dermatologist and Eden goes to the GI specialist.).
Mitchell looks so good. Just two weeks ago he didn't have the strength to blow bubbles off the bubble wand, and last night did it with ease. His bad eye is opening up a little, which gets us excited. He is very weak on the left side still, but that will likely take a lot if therapy to repair. We feel so grateful to see progress, which boosts our hope. He began chemo on Monday. We were a bit nervous, and prayed for direction. After speaking with the doctor, we felt reassured. It is called timazolamide and is less concentrated than others. It is supposed to work well in conjunction with radiation. We were going to mix the drugs ourselves here, but tried having Mitchell swallow the five pills in applesauce first and he took them like a champ. He's amazing.
I visited the other family from our ward today and they are moving along quickly in their treatment. They seem to be adjusting well and taking things in stride. That's how these things go--you've just got to go day to day and take things as they come.
We hope to stay out of the hospital, and MIGHT even get to go home for a couple days at Christmas. My sister and mom left yesterday. We miss them. We feel so blessed how all has worked out for us and know the Lord is in control.
SO incredibly grateful!!!
Mitchell did great yesterday and after a MRI haste this morning, things were clear and he got his shunt taken out!!! We are back to where we were before and it feels so good. The best part is Mitchell feels great and looks amazing. They say it's too soon for the radiation to work, but I swear he looks better. Trying not to get hopes up, but so excited. As I said before we feel so confident that he is going to get better.
On a terribly sad and strangely coincidental note, a family from our ward arrived yesterday with their daughter (Ashley Merrell) and she has neuroblastoma. There are only 650 diagnosed a year for her condition, and the boy who gets radiation after us lives off Speyers (a street in Selah), which is only one street away from this little girl and has neuroblastoma. My mind is thinking something has to be up with these coincidences. Plus Mitchell's cancer is more rare (about 300/yr) and he is in the same community of 7,000 as both these kiddos. Mind blowing! Anyhow, please keep them on your prayers too. We are excited to have someone to serve.
Still doing great! He's clamped off today on his ventric to see if his body will reabsorb the CS fluid. Fingers crossed! If not, he will have headaches, vomiting, and extreme fatigue, so I doubly want this to work. Radiation is going well. He has a terrible time scheduled and ends up eating only once per day.
Jackson's feeling better and no one else is sick! Yay!!!
Bad angle, but cute baby! I am so happy she came to our family. Even on bad days she is there to make us smile and laugh. What a blessing!
Thank you for the faith and prayers! Keep them coming. Mitchell's infection is gone and they're trying to see if he might not need the shunt after all. Great news!!!
Unfortunately poor Jackson got the stomach flu last night, so keeping our fingers crossed that none of the rest of us catch it too. SO grateful my hard working mama is here to take care of us.
This is a pic from a few says ago. My other two children are slightly neglected by me. Jackson lost his second tooth and is now an official big kid. It makes me sad that he has grown so fast, but excited for him too.
Another wonderful day! We played "hot/cold," had the sacrament delivered to us, read lots of stories, watched family videos, and had some more visitors (the Smiths from church). Mitchell had a big smile on his face all day.
Chad had a good thought tonight when we were talking. He talked about how when he was on his mission, he was put into leadership positions quickly and others would tell him how he must be a naturally good leader, but he learned he was given those positions to become a leader. In this situation, we are given this trial not because we already have the faith to do it, but to become faithful enough to do it - both for us and those around us. The refiner's fire helps us to become.
We are certainly learning through this experience. Thank you all for your love and support. I am so grateful for such wonderful family and friends. In that area we are abundantly blessed. Hugs and kisses to all.
Great day. Mitch is really weak, but was in good spirits all day. We didn't have to go anywhere, so we got to snuggle and play a bunch. We had a visit from our bishop and his wife who brought goodies, and a package from my sweet friend Leanne. Best part of the day was when he was able to get out of bed if only for fifteen minutes. I don't know whose smiles were bigger, his or ours. He found his yellow taxi too!
One of my favorite parts of each day these past couple years is when I lay down with Mitchell for nap time. We read books, sing songs, and then I tickle his back and stare at him for awhile. I've missed that bonding time this past month, and today I was able to do it again and then he played with my hair for a long time like he always does too. I am so grateful we had this special daily tradition and that I have those memories.
Sorry for no post last night or first thing this morning. We've had busy days and late nights.
Mitchell was very puffy and swollen yesterday but in much better spirits overall. He had a huge smile when I came in, which makes me so incredibly happy. He did, however have a fever during the night and again could not go to radiation. Instead he got another MRI to see if he had a fluid sack that might carry the dangerous bacteria. That cleared, so next they talked about exchanging the temporary shunt for a new one since his cerebrospinal fluid still showed bacteria. So last night he again underwent skull/brain surgery and received a new shunt that so far is putting out clear CSF. Great! Also, he hadn't had a high fever in over 24 hours, so today he went to radiation again.
The poor guy has had to fast for long stretches every day. We've been working in meals at all hours. His digestive system is messed up, so yesterday he received a suppository, which made him #2 a few hours later. Unfortunately the poor guy was so backed up they were literally large rocks. I had to pull them out and felt like I delivered a baby. (I know, TMI.) My poor guy has had it rough.
Today, as I said, he looks better. Heart rate back down, blood pressure down, and fever down. He's in pain, but it's hard to tell if it's from his second head surgery in a week (third surgery in a week altogether) or if he has a radiation headache, or possibly backed up colon again. He hurts everywhere and doesn't know how to tell me.
It's funny though... Of course I know he is sick, but it still doesn't seem like he's THAT sick until I read pamphlets like,"Caring for Your Child With Cancer." Those things make it feel real in a scary way, and I don't want to feel that way. Most of the time I still feel like somehow he's going to pull through this even though he has a highly deadly cancer, hydrocephalus, and now meningitis.
On a lighter note, we're going to have to figure out how to reverse the signs of steroids. My little three year old is not just larger in weight and height, but also looks like a fourteen year old with a unibrow, mustache, and hairy arms and legs!
We watched some family videos last night and are still blown away by how quickly life can change. One month ago today, Mitchell suddenly woke up weak and unable to walk. We've talked about how humbling this has been. When it was his eye, we felt sorry that he would have to endure criticism from peers; then it was the glioma, and we thought how wonderful it would be to just deal with the eye; then it was the hydrocephalus and we thought too bad we weren't just doing radiation/chemo; and now we're fighting meningitis thinking a permanent shunt sounds great! How much we take for granted in this life. Chad reminded me of Mosiah 3:19 which loosely reads, "The natural man is an enemy to God...and will be unless he becometh as a child: submissive, meek, humble, patient, full of love, willing to submit to all things which the Lord seeth fit to inflict upon him, even as a child doth submit to his father." Like a loving parent to a child, we too must be obedient seeking out the Lord's will for us and pursuing that. Maybe that's a lesson I needed to learn. I also keep thinking of "Ask and ye shall receive." The Lord knows what I want, but I also accept whatever He wants.
Regardless, we love this little guy so much. He is such a special and strong spirit to endure so much. He loves so strongly and can smile when I know I could not. He is a marvelous example.
I love this picture, because it demonstrates the love we have in our home.
This is actually a pic from yesterday--forgot today.
What a day of ups and downs. Mitch looked terrible most of the day, especially this morning. He was swollen and could barely open his eyes because they were so puffy. He fought a fever all day. We got some preliminary labs back and his cerebral spinal fluid (CSF) is infected. The fact that the bacteria didn't show up yesterday means we caught it in the early stages, but it's a nasty type of bacteria found in hospitals, which makes it more resistant to common antibiotics. We're giving him the hard stuff now, so we hope in a few days he'll be back in the game. Our oncologist said this strand of bacteria is particularly painful. He is so strong and rarely complains, but I can see in his face how excruciating it must be. They will give him pain killers, but don't like to because they want to monitor his alertness. Also, they want to observe his fever so limited Tylenol as well.
I feel I was blessed last night for everything to suddenly look better, because I couldn't handle the addition of meningitis in that moment. Today I was blessed with extra strength to do what had to be done and do it joyfully for Mitchell's sake.
We hope these antibiotics get working quickly, that his fever goes down, and that he can get on with treatment to fight the ultimate battle. Like any epic hero, Mitchell's journey is laden with many obstacles. I hope this is it, but am expecting it not to be. Luckily we got a fighter and he can do this; that's what Chad keeps saying, "He can handle a lot more." I hope so because he's going to have to.
On a happier note, Jackson is here to stay with us for a while. His brother continually called out for him, and since this ended up being more than just treatment, we thought he should be here. That brightened Mitch right up to see him again along with G&G Hatfield, a gift package from his great Aunt, and Brother Schickedanz from our ward. He also had a dog visitor today and the music guy again that put smiles on his face.
Everyone at this hospital is amazed by this special little boy. We feel so blessed to be his parents.
I was weak today.
I felt much better this morning. Chad (who by the way should earn the father of the year award,) called this morning and said they decided Mitchell could do radiation today. Yay! I was excited. He had to fast again though, because he had just eaten breakfast. They transported him to the other hospital where the radiation machine is via ambulance (although they couldn't turn on their alarms b/c it wasn't an emergency--lame) and everything went well. The anesthesiologist thought Mitch looked so great--he did.
Tonight after I got back from feeding Eden, Mitchell looked pained. I laid by him and for the first time he complained of pain in the head. Then we noticed a fever. Next, his CSF fluid was cloudy. He began screaming in pain, which is so not like him. The doctor dropped the word meningitis and I broke. Chad took over and I went to the bathroom to regain my composure and talk to Heavenly Father. I don't exactly know what to say anymore, so I just asked Heavenly Father to not let him suffer and do whatever is best. I especially asked for Him to show His hand tonight.
After Tylenol Mitchell's temp plateaued, and he was more talkative--closer to normal. His blood draws look good and his fluid from last night was great, and they said bacteria would have showed up then. He dumped a bunch of fluid, which helped. The conclusion now is he was overloaded. Most likely post-surgery fever+radiation headache+fasting/fatigue=too much. We should know more after tonight.
So thankful I have a faithful husband who can keep pushing me forward when I don't see the steps. Heavenly Father did show me His hand; I know He's here.
Well, I tried to upload yesterday, but the Internet at Ronald McDonald stinks, so it never happened. Too bad because today was an extra crappy day and I can't put a happy face on at this moment (give me some sleep and maybe the sun will come out tomorrow).
We did our first dose of radiation this morning, which was nerve wracking in itself. Just when you thought it couldn't get worse for our little guy, it did. He's been leaking fluid from his incision the past couple of days, so we asked about that at his appt today and they called neurosurgery who told us to come in right away. Before I get to the climax, I thought I'd mention the poor guy had three accidents today, which never happens and he didn't notice/tell us. Anyhow, after labs, CT scan, etc the drs decided he has hydrocephalus and is leaking spinal fluid. Short story is he was rushed into neurosurgery to get a temporary shunt installed so they can monitor the fluid ensuring it's not infected. If that's clear, he'll get a permanent one installed Thursday. He fasted for 27 hours without much complaint. He asked if he could have anything at all after his procedure, and Chad hesitatingly answered, "Yes," thinking he'd ask for a dog. Mitch had him promise before asking for a yogurt. Funny kid.
My sweet mother hopped on a plane within an hour and is here to help for a while. Radiation & chemo are temporarily postponed. I hate so much that I have to ask my sweet THREE year old boy to endure so much; it's too much. Yet, through it all he can still smile and laugh--albeit less often and in pain--so I guess I can too. He has won the hearts of all he comes in contact with and has many cheerleaders and advocates here too. We just keep going forward faithfully, believing God has a purpose for us and this beautiful little boy. Mitchell's body may be weak, but his spirit is so strong, and I believe it can win out.
Some of the info I tried to post yesterday:
My sis-in-law made a blog with these posts for those who don't have Facebook.
mitchellhatfield.blogspot.com
Our address is:
Hatfields
5130 40th Ave N.E. RM#388
Seattle, WA 98105
Thanks again for all your support. You never know what it means until you go through something like this. Many have asked what they can do for us, and I ask you to do a service for someone else in honor of Mitchell. We've been so blessed and want to pay it forward. We'll keep you posted on our end. Thanks in advance for prayers.
The simulation went well yesterday. Now all the physicists work their theorems and angles to target the tumor and we begin radiation Monday. Today they're surgically installing a port through a jugular vein for easy access in the months to come. We're also picking up our chemo drugs today, which will also begin Monday. We get to mix up a tonic for him each day. Jackson comes to visit tonight and we are so excited. Mitchell asks for him at least ten times each day and needs his brother to help brighten his spirits. He seems to not feel well, and is very lethargic. Last night he toppled over at dinner. Although there are all these scary parts along the road, Chad and I feel so strongly he's going to make it. Fears and emotions aside, when we humbly pray for inspiration, the only thought in our mind is his survival. I feel confidence in that and it gets me through each day.
Here at the Ronald McDonald House. Unpacked and ready for our early morning simulation. They'll measure everything and make their marks so each treatment targets the same. Mitchell is in good spirits. We sure love this little guy.
Also forgot to mention Jackson lost his first tooth tonight when we weren't there. Wish I could have been there.
