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.
Change of plans: no more Houston. The Drs don't think the proton therapy will provide greater advantages than the therapy they have in Seattle, so we're staying here. We had the ultimate decision, prayed about it, and feel that until we feel a definite "no" we are going to keep going forward and trust that Heavenly Father is in control. We are heading over the pass tonight or tomorrow to begin treatment.
We met with our treatment team today and everyone feels the best course of action is take a very aggressive approach to treatment. The plan is to start radiation treatment at MD Anderson Hospital in Houston as soon as possible. It's a little difficult to make plans as so many key people are off for the holidays, but t...hey hope we can get started mid next week. We'll find out for sure by Monday afternoon.
Mitchell will have daily radiation treatment for about six weeks. He will also be undergoing chemotherapy treatment at the same time. The chemo will continue after the radiation treatment but can be handled from Seattle, so we will return... then. It was a very frank and scary discussion, but Amy and I both feel peaceful about this being the right steps to take. We are happy to get started on treatment. We remain optimistic. MD Anderson is the best cancer center in the nation, and I think we'll feel better once the process gets under way. The path to recovery will be started. Thank you all for your prayers and concern. Happy Thanksgiving.
We had a "Merry Little Christmas" tonight for FHE. We let the boys open their big presents after our lesson since we'll likely be celebrating away from home this year. We had baths, put on comfy PJs, Christmas music, and made hot chocolate. I'm so grateful for these moments.
Home for a few days and loving it. Time to put up Christmas decor so we can enjoy it before we leave. Mitch is trying hard to adjust, but needs LOTS of help. Can't say enough of how good it feels to be home, except now I have cleaning and laundry to catch up on.
This isn't the greatest pic, but all I had for today. Mitch is hooked on chocolate pudding since being at the hospital and eating his "doctor food." Tonight he licked the cup out.
What a wonderful day. We finally received the test results tonight. Who would have thought a week ago that hearing the words "your son has a... brain stem glioma" would not completely devastate us? Today we heard those words and we're okay. In fact we feel great--optimistic. This past week has shown us (yet again) that God is in control of everything. The pathology results took longer than usual, but looking back, I think we needed that time to mourn; regain perspective; and find the necessary strength, faith, and optimism to endure this trial. Heavenly Father mercifully gave us that time. Plus, he gave us some really great days to enjoy Mitchell's sweet and mature spirit. He is a chosen soul who, we believe, will conquer this trial. Chad and I both feel that way. I felt prompted to read D&C and happened to click on section 6. I read, "Be patient" and "Did I not speak peace to your mind; what greater witness can you have than from God? ...I have told you things which no man knoweth." Also all week I've had "...ye will receive a witness AFTER the trial of your faith" (from Ether). Doctors are blessed with knowledge, but only God knows everything. We feel abundant peace and hope. Thank you to all for the tremendous love and outpouring of prayers for us. WE FEEL THEM! We will likely pursue radiation therapy, because they believe this to be a high grade tumor. Brain stem gliomas are rare, and Mitchell's location is even more rare, so there are no statistics to compare. There is a chance we may go to Houston or Boston for treatment because they specialize in a newer radiation therapy that reduces long term side effects. We will know more next Wednesday when we meet with the radiation oncologist. Don't google this on the Internet (the info is old and so many diff factors play into it) and DON'T GIVE UP on our little man. He is tough as nails, and there are so many variables and unknowns. Again...ONLY GOD KNOWS. We will keep faith that he will come out on top ALWAYS.
Amy is writing in her journal and asked me to give an update. We didn't get much news today. Everyone is still waiting for more definitive results from pathology. We hope to hear more in the next day or two. It sounds like treatment wouldn't start until next week no matter the news, so if another biopsy is not needed w...e may possibly get to come home for a day or two this weekend. The doctors seem to be less inclined to hold open the door for less serious diagnoses, but this does not dampen our spirits. Mitchell continues to show that he is up to any challenge. With the Lord's help he can do anything. He took two walks up the hallway with some assistance. From morning to night he is a happy chatterbox rattling off jokes nonstop. He doesn't complain but spends most of his energy making sure everyone is happy. When the monitor alarms go off he will hold out his arm to hug me, pat me on the back and say don't worry about it daddy. He is always telling us to give each other kisses and asking to touch baby sister. He is constantly rubbing our hair and patting our hands to show his love. It's impossible not to believe this strong little spirit is going to come out on top. We were also blessed to have some special visitors today. A musical therapist came to the room to play songs. Mitchell loved it and really beat away on the little drum with his right hand. When asked if he had a request, Mitchell of course answered I am a Child of God. The man listened as we all sang. We appreciated his visit. I hope his dad has forgiven him for going to a crazy liberal college to get a masters in guitar songs for kids. We were also visited by some of Amy's young women who ventured the snowy mountain pass to spread some joy. We are truly touched by everyone's kindness and prayers. Lastly, we are very appreciative to the Ronald McDonald house for housing our family. Please toss your change in their donation box at your next visit to McD's. It's a wonderful operation. Our very best to all!
Yay for today!!! Mitchell looked so good today. He woke up chipper as usual, but surprised us by taking some steps (assisted). The physical therapists came by and said he will get back on track after his treatments because he is a tough playful kid; he looked much stronger than he has the last few days. We got to go to... the playroom for the first time since before the biopsy, and he was so excited. He got a bath tonight and even got to take his IV out. His Grandpa Barclay and Aunt Taunya arrived, so yay for more visitors. Also, preliminary pathology reports show they got something, so yay for no more biopsies! Chad felt strongly that we would see the hand of the Lord today, and we certainly did. It totally revived us too. Mitchell is such a happy boy, and that spreads all around him. I am so grateful he had a good day. Words will never be enough to thank you all for your investment in his cause. Just know it has completely affected us and clearly helps. Please pray for good news with the biopsy results tomorrow.
The tumor board meets to discuss our plan. Also, please remember all these other sweet angels who sit here struggling for life too. This experience has changed me.
Not sure what to say again today. Chad called me at 5 am to come over because Mitch's heart rate keeps going low and they were going to do a cat scan. The cat scan looked fine. They did an EKG, which also looked good. His blood pressure goes up when his heart rate goes down, which may indicate pressure in the head. He ...was awake most of the day, so I got to snuggle and be with him. He is truly the cutest, sweetest little guy. He always asks for hugs and says,"hi daddy/mommy" to us every few minutes. Love him. His brother came back today and he was so excited. He tells everyone at the hospital about his brother Jackson. He also had two aunts, an uncle, two more grandparents, and two cousins come to visit. That finally wore him out. We're still waiting on pathology, and I'm very anxious to get moving on treatment. I keep thinking of President Uchtdorf's talk on "The Infinite Power of Hope." Chad says he's going to believe Mitchell will be healed until he hears otherwise, and even then he says he doesn't believe the drs are always right. Heavenly Father may have a huge miracle up his sleeve waiting for us.
I'm not really sure what to say today. It was a hard day. Mitchell was cheery. Our nurse was teary-eyed several times because Mitchell is so sweet. I can't lie, I'm scared. His heart rate goes down in his sleep way more than it should. He can't stand on his own at all anymore or control his left side. I see he's getti...ng worse and I'm frightened. Chad is always there to reassure me that Mitchell will be fine. We know there's nothing we can control, that it's all in Heavenly Father's hands. I know Heavenly Father knows what's best. Our faith is strong, so if it is in alignment with the Lord's will, he will be healed. My hope is that the Lord will heal Mitchell; that this experience will serve to teach and strengthen all; that Mitchell will serve a mission and marry in the temple. Please heal my baby Heavenly Father; let him live to continue his light and example on this earth.
Today was filled with many highs and some lows. Mitchell finally woke up at 9am. His nurse was touching him and said, "Sorry I have cold hands." He tried to get up and rubbed his hands together telling her, "You go like this to get them warm." Then he asked for "panpakes." When I didn't get them right away, he reminde...d me to "Go get my panpakes." That gave us a good laugh. He ate well and got excited to see his brother this morning. Jackson was a little nervous to see his brother so altered. We were released out of ICU by noon'ish. Mitchell looked pretty good until 3'ish when he started showing signs of pain. He's not a kid to complain, so when he was batting away help I knew he wasn't feeling well. Plus he kept scratching his stitches. They gave him some pain relief, which got him acting more himself again. He is still very much not himself though and sometimes thoughts of "what-if" and worst case scenarios flood my mind. Gratefully I married the most positive guy around who gives me great strength. Mitchell LOVES his daddy so he's been relying on him too. Our parents have sacrificed and taken great care of us. We feel so blessed. This is a humbling experience. It has made me realize how selfish I've been when others needed my prayers and strength and I only gave a small part of what I could. We will never be able to adequately thank all of you. How blessed we are and indebted to all of you who have fasted, prayed, and added our names to prayer rolls (even the Mormon Tabernacle Choirs'!). We read your comments,etc and they have deeply touched us. Thank you. Please continue to pray for excellent biopsy results! ;) With Love, The Hatfields
Doing well post-op. He even kicked his foot away from the nurse. :) The surgeon didn't know if they got what they needed or not because they ended up on the edge of the tumor. We'll hopefully find out in the next couple days what we're dealing with. Of course we pray it will go away altogether, but if it has to be a tu...mor, we PRAY it's low-grade, which are more successfully treated. We feel good about our oncologist who specializes in gliomas. Most of all we THANK YOU for prayers and fasts. You can not know how much that means to us and how much peace it has afforded us. We sort of felt hugely relieved like it's over, but really this is just the beginning. Please keep praying with faith for our little angel. We have a lot of hope.
Please, PLEASE pray for a miracle! Our world desperately needs this little angel. Tell everyone you know to pray too, please! Miracles can happen. They think it's a brain stem glioma.
