Miss Phoebe is snoozing away and I am enjoying the peaceful atmosphere of her room here on the HEMOC (Hematology/Oncology) floor. My days of sneaking Starbucks into the room and hiding snacks in every nook and cranny are over. I can finally eat and drink in broad daylight. It’s the little things that make hospital life do-able, and here on HEMOC I have access to an ice machine and a coffee maker and I can order room service and eat in the room. On ICU I always had to leave Phoebe and go eat in the waiting room.

The boys and I had a great day of school and Nathan slept off his hospital hangover while my Mom had Phoebe duty. Phoebe had a great day, and tried to talk more than she has up to this point. As her respiratory therapist was leaving this afternoon. she said “thank you for doing so well Phoebe” and Phoebe said “you’re welcome”. Then she tried to tell her Mammaw  “I want..I want” several times. She said all the names of her brothers and asked for Mama when she woke up from her nap. Her speech therapist commented that she could tell Phoebe would be chattering away if she had better lung capacity and that she will do just fine as her lungs clear up. THAT was exciting to hear! It was so wonderful seeing her really interact with us. Her weak little smile lights up the whole room.

Our meeting tonight with Phoebe’s oncologist went very well. I feel like we got so many of our questions answered in a satisfactory way and that we walked away encouraged. We have some things to pray about and I am confident that God will continue to guide us each step of the marathon.

Benjamin had a better day and he opened up last night about how God has been leading him to pray for the family members of those affected by the drug-related violence in Mexico. He said He feels like someday he will go back to Mexico as an adult to live there and minister to them. I was blown away when he told me this. It made me wonder if our dreams for Mexico will be realized through our son. We all miss Mexico and the life and ministry God gave us there. God gave us Phoebe there, and our dog Sadie is also a Mexican import! I pray one day we will live there again.

Life takes some sharp turns, and it has been a wild ride lately. The beauty of all this mess, is that the depths to which we are taken lately, make the normal everyday moments seem like miracles. So tuned in are we to the absolute magic of just living, of just going about the day to day, that time is measured differently in our hearts. Small things are huge, greatly valued. We have more grace with our boys, we verbalize our love and approval of them more frequently, we major on the big stuff and let the small things slide. We have more slumber parties in Mom and Dad’s room, we take bike rides as a family, we are purposeful about our time together. This is the gift that every parent of a child with cancer can attest to. It’s the secret we all know. It’s the beauty from ashes.

Today I have been meditating on this:

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.”   2nd Corinthians 4:16-18

Not losing heart,  Amey

My Ronald McDonald House bracelet is tattered and about to fall off. I have kept it on my wrist since the first unbelievable week of Phoebe’s ordeal in January. I’ve been reluctant to take it off, I don’t know why..maybe keeping it helps me believe that this is all still new and not really my life. Like this is something we’re just going through that will be over soon and life with Phoebe can resume as normal.

But I know better. The bracelet will fall off, the clothes in her closet will be too small for her to wear when she actually gets to wear clothes again, her hairbands and clippy bows will sit in the bathroom drawer for a long time to come, obsolete without hair to fix up. I hate that time is just moving on, that I brought her to the hospital January 1st terrified that she had Meningitis only to find out she had a brain tumor. I brought clothes for a two night hospital stay. Now I’m reminded daily that this is a marathon, not a sprint. I want the sprint.

This morning when I arrived at the hospital Phoebe looked dehydrated to me. Her eyes were sunken in, the skin on her face was flaky and she looked more sleepy than usual. Her heart rate had been high last night and continued on into the 180’s today. I suggested last night that I thought she needed more free water since her sodium was also on the high side. They disagreed.

Today they decided to give a little free water but I still thought it wasn’t enough. I mentioned dehydration again. So the day went, physical therapy came and Phoebe was fussy, a bit resistant and hard to wake up and engage, her sodium climbed a few more numbers, her heart rate continued at 180 even after Morphine. I kept putting all the facts next to each other and coming up with dehydration as the cause for her elevated heart rate. Before I traded shifts with Nathan I talked to our nurse and expressed my opinion one last time that she was dehydrated.

Nathan just called to tell me that her sodium had shot up to 162 and they decided to give her the maximum amount of free water because she’s dehydrated. Her heart rate is down now from 180 to 155. It’s frustrating to me that she had to spend last night and today struggling to engage, struggling with her physical therapy, struggling with her heart rate because of something so easily remedied. It’s hard to see what the problem is and not have the authority to fix it, especially when it comes to taking care of my own child. These are the little details of our days that wear me out. These are the things I think about while falling asleep and the concerns that bolt me upright in the morning texting Nathan at the hospital to see how she did through the night. Oh to be consumed with all these details is wearisome. How can this be a marathon? How can there still be so far to go?

I don’t want to be ungrateful for the opportunity to fight. Some families don’t even have that option. Some cancers are terminal without an option for a life-saving treatment. I am grateful for the chance to fight, and yet I am battle weary. The highs are much higher than I anticipated, and the lows are much lower than I expected. This is why I’m so thankful people are praying for us. I feel like the only thing I can pray these days is “help her Jesus”…”please Lord”. At a time when I would expect to pray a lot, all of my words fail me, and only pleas are left.

I am relieved that Phoebe’s heart rate was not an indicator of something more serious going on and that she will feel better as her body re-hydrates. Tomorrow morning she has an upper GI test and Barium enema to check her intestines and GI tract to make sure she doesn’t have any strictures or narrowing in the bowel that would cause her tummy to bloat up. Please pray for peace for her as she has the procedure. The tests will be lengthy and she needs grace.

Thank you everyone for loving our girl and praying for our family.

~Amey

Sorry for such a late posting, we just got back from a wonderful benefit concert for Phoebe where we all had a great time. This morning unexpectedly found us dining out for breakfast with friends from Lindale which was a great way to start the day. We enjoyed visiting and the boys had a good time with their friends.

When we got to the hospital, Phoebe had on red, heart shaped sunglasses and several big, plastic diamond rings and was rummaging through her box of trinkets. What a sight to behold! She was sitting up and visiting and putting stickers on paper, it was so sweet. Nathan and I spent the afternoon with her while Grammy took the boys home for the afternoon and we got to have some much needed snuggle time.

Tonight we went to Denton where some wonderful friends who are like family to me held a benefit concert and auction for Phoebe. It was incredible the way people banded together to make it happen and we were beyond blessed. The barbeque people volunteered their service and time and fabulous food, the band was incredible, the singers excellent, even the police officer there volunteered his time to be a part of the event for Phoebe. Wow.

People donated some amazing things for the auction and I couldn’t believe the generosity that was overflowing in that place tonight. It was a wonderful time, and it was good to be away from the hospital and out of Dallas for a few hours too. It was a beautiful night to be outside and I just want to thank everyone who was a part of this evening.

Phoebe continues to improve little by little and we are still on track to move back to the Oncology floor by Tuesday if she keeps it up. Please pray for her breathing to strengthen so that she can maintain her oxygen on her own, for her withdrawals, that she would be able to continue to wean off the meds as comfortably as possible and for her strength to grow.

It was a good day, a nice change of pace and we are feeling encouraged. Thank you all for praying for us, for loving us, for surprising us with your generosity. It’s humbling to be on the receiving end of so much generosity.

I was right, my 3am party girl is back, and last night she was in no mood for sleeping so we partied UNTIL 3 am and then again at 5 am and here and there in-between. Then we got up and prepared to go downstairs for a dye-contrast scan to see how food moves through Phoebe’s tummy. She finally fell asleep in the hour long scan and I snuggled up on a bench and went to sleep too!

The scan showed that Phoebe’s tummy empties at half the rate of the average child her age. No wonder she doesn’t tolerate the higher volume ng tube feeds, the food just sits there in her tummy for a while building up rather than digesting at a normal speed. This is progress! We have 1 clue about her tummy distension, now more tests are needed. On Monday she will have another dye-contrast to see how food moves through her intestines and the scan will show if there are any constrictions or narrow places in her bowel that might cause the tummy to back up like this.

Her breathing gets better with each passing day, it is more even and less labored and only really seems to be uncomfortable for her when she is on her back. She has tolerated the daily oxygen weaning well and is on her way to having her nasal cannula out.

Today she made up for last night by sleeping the day away. She was zonked when her physical and occupational therapists came by, but we got her out of bed and sat her up in her little chair anyway. She did some of her therapy with her eyes closed, silly girl!  She woke up about half way through and we got to see her beautiful smile come through her sleepiness as she put stickers on our noses.

Seeing that smile goes straight to my heart and causes a little love explosion every time. I love that girl! I was so proud as she scooted forward on her chair to try to stand up. She winced and frowned, but she did her part and stood up 3 times with a lot of support. It was incredibly taxing on her I know, and it’s tough to see how much strength she has lost, but all of that was overshadowed by her incredible will and desire to work hard. She has a strong motivation and that is beautiful to witness.

Tonight the plan is to help her sleep with some Ativan as needed so that she can get her days and nights turned back around and be fully engaged and awake for her therapies tomorrow. She will also be seen by a speech therapist for a language evaluation and I am hoping they can start addressing that as soon as possible. Right now it’s hard to tell what is an actual speech issue, and what the Methadone and Valium are contributing to. I know speech can be slurred on heavy pain meds and that labored breathing can cause speech interference as well, but I think she might need some help with those muscles.

It was a great day. It felt very productive, like we started down the right path to investigate Phoebe’s ongoing tummy issues, she made progress with her PT and OT and we got connected with a Speech consult tomorrow. The highlights of my day were: Phoebe playing with my hair and saying “aaawww” like she does, Phoebe waking up with a groggy smile and saying “Mommmmyy”, seeing her try to stand up, seeing her play with her nurse, Abby at 4 am and smile and have a good time.

Tonight Nathan’s Mom takes the night shift and for her sake, I hope she gets more sleep than I did last night…but I don’t think any of us will complain ever again about a 3 am Phoebelicious party! We are just thankful to have our girl back! Tomorrow Nathan’s Mom will come spend time with the boys so Nathan and I can be together with Phoebe for the day and we are looking forward to that. It was hard to be away for so long while we were sick.

Thank you all for continuing to pray her through, she is a little fighter and I am so proud of her resilient spirit!

I walked in this morning to Phoebe saying “Hi Mom, Hi Mom, Hi Mom”…it was precious! She was sitting up visiting with her Aunt DeDe and playing with toys and her eyes were so open and alert, it was wonderful. I will have Nathan take some video of her tomorrow to post on the website.

Phoebe and her favorite coin purse.

The meeting today was fine, I’m not sure what I was expecting, but we didn’t really learn anything new. The main take-away was that Phoebe needs to continue to be weaned from the Vapo-therm breathing help and the extra pain meds she needs from time to time before she can move floors. She will continue to wean from the Methadone and Valium over a period of time and can do that on the HEMOC floor.

I wasn’t expecting to discuss chemotherapy treatment in this meeting, but her Oncologist said today that they would like to go ahead and place the Omaya port in her head at the end of this month. This is the port that will deliver the Methotrexate directly to her tumor site. I almost broke into tears at the thought. Nathan and I have a lot of questions and concerns but I felt it was best saved for another day when we can meet one on one with the oncologist do discuss her treatment in depth. For now she is on a vacation from chemo and just focusing on recovery.

Tomorrow morning she will have a dye test, where dye is placed into her NG tube and a scan is taken to make sure that the dye stays in all the right places. She has some fluid is her abdominal cavity that has been slow to reabsorb and since her tummy distension is an ongoing issue they are going to continue to search it out.

Physical Therapy

Over all, Phoebe is doing great. She can say a few words but seems to have a difficult time forming them and that is probably my biggest concern. My prayer is that when she gets her swallow reflex back she will be able to form her words again. She is “all there”, just woozy from the Methadone and Valium, can follow instructions, can make a little smile, and she responds to us. I am trying to be patient in her recovery and it’s difficult. I’m so thankful for the progress she has made and for what God just brought her through and at the same time it’s difficult to see my Phoebe unable to tell me what she needs with words.

Right now she is contentedly plucking blocks out of one bucket and placing them in another. I expect we’ll have lots fun tonight, it looks my 3 am party girl is back!

PS. Don’t forget to watch Phoebe’s “Orange Popsicle” video on the side bar!

Tomorrow I will FINALLY get to see my girl. At long last Nathan and I are over this cold. I hear she is doing well, improving in small ways each day and I can’t wait to see her with my own eyes.

Phoebe trying to get some sleep with her Aunt DeDe watching over her.

Speech therapy came today and performed a swallow test which showed that she is not quite ready to swallow liquids on her own. They gave her some toys to chew on that will help her with that reflex. I had no idea she would need so much therapy to re-learn how to do things. I guess I expected that it took longer to lose those abilities. She will have to learn how to swallow, drink, eat, walk, use a fork, etc.

Tonight we took the boys out to eat, something I usually enjoy, but ever since Phoebe has been away from us I ache each time we have to request a table for five. She is so obviously missing from our family and that revelation sits like a heavy rock in my gut each time we go out somewhere without her. I see a little girl her age and I physically hurt, I pass by the little girl clothes in the store and turn my head. I’m weary of that empty feeling. Tired of it hounding me. I was thinking tonight that even if she was at dinner with us, she can’t swallow, can’t eat..can’t walk. I feel like I am losing her in increments.

I might be extra emotional tonight because I haven’t seen her since Friday and maybe I will feel like it’s all turning around when I see her in the morning, but right now I just miss her here with us, living a normal little girl kind of life. I miss being free from “what if’s” and having the luxury of a mind not consumed with medical details.

Tomorrow is our meeting with the ICU and Oncology doctors to talk about where Phoebe is in her healing process and where we need to go from here. This is not a chemotherapy meeting to discuss the details of her chemo treatment specifically, it is more to get everyone who is working with Phoebe on the same page. She has several teams of doctors involved in her case: Oncology, Endocrine, Infectious Disease and of course the ICU team, so it’s important that good communication takes place between all of those and everyone works together toward the same goal.

It looks like Phoebe could be moving back down to the Oncology floor as soon as this weekend if all goes well, and that would be wonderful! We love our ICU nurses and Phoebe has some very special ladies taking care of her right now who know her from before when she had her brain surgery in early January. We hate to leave the nurses, but we won’t miss the ICU floor. We love the HEMOC floor (Hematology/Oncology) because we have fridge space, comfy couches for sleeping and we can have food and drinks in our room. It’s just easier to feel at home there (and we have great nurses there too!).

Of course, ultimately we would love to have her at home for a few days and we are praying for that opportunity soon! We have gotten to know some of our neighbors this week and are really blessed to live in a great neighborhood with such wonderful people. People have been bringing food over, inviting the boys to play and stopping by just to chat. We feel very welcomed here.

I can’t wait to post pics tomorrow of Phoebe awake and playing. I am looking forward to seeing her really awake for the first time in weeks! Here’s to a wonderful day with my girl!

I am still at home. I planned on visiting my girl today, but the nurse advised it was better to stay away and that I couldn’t touch her if I came up, so I stayed back. I think it would have upset her to have me in the same room but be unable to touch her. I am praying that I wake up tomorrow symptom-free!

Phoebe and the boys after the goat had twins. This was just a few weeks before the tumor was discovered.

She is having more withdrawal symptoms: agitation, restlessness, inability to sleep, but that is to be expected as her body to adjusts. She otherwise seems content and is improving each day. She will speak if you ask her to repeat after you, but otherwise it seems like her throat bothers her too much talk and she doesn’t have much of a voice when she does from the vent being in her throat for so long.

Our oncologist said that her breathing pattern is back to normal, it’s just labored and is most likely a result of her swollen tummy (yes, still dealing with that tummy) and her congestion. We have been concerned about her stomach issues from the get-go because Phoebe’s main complaint in the weeks before she was diagnosed with the tumor was her tummy pain. About a week after her brain surgery, her abdomen started bloating and it has continued to do so off and on, causing her to take shallow breaths which in turn caused a partial lung collapse. Now we are still dealing with this stubborn issue and are hoping to get some answers.

We will have a meeting on Thursday with the ICU team and Phoebe’s Oncology team to discuss her transition back to the Oncology floor. Her doctor has mentioned that we will be able to take Phoebe home for a bit after she gets more stable and I get giddy just imagining her here in our home! Today in the car Deacon said “Why do I always have to sit back here alone?”. His older brothers were paired up in the front seat and it’s not always that way, but it reminded me  how much Deacon’s life has changed in the past 2 months. He and Phoebe were the dynamic duo and I know he misses his playmate.

Tonight at dinner Deacon offered the prayer; “Dear God, please help Phoebe have a good day and be good and please touch her.” It was so sweet. Nathan said he thinks Deacon’s prayer life is almost entirely devoted to Phoebe. He misses her so, and I miss her for him. I know when she comes home the boys are going to be climbing over each other to play with her and show her her room and all the beautiful blankets and toys that people have sent to her.

I can’t even imagine bringing her home! I hate seeing her unused car seat in the garage every time we pull up to the house, and the empty seat in our van. What an incredible feeling it will be to have all four of my babies in the car at one time! I have so much expectation  it makes me nervous to hope she can come home because I don’t want to feel let down again. BUT, I will not fear bad news! God has taken good care of her and I am so grateful that I am writing about Phoebe coming home, instead of sepsis on this blog tonight!

We have MUCH to be thankful for! Thank you for your prayers and posts these past few days, sometimes they reduce me to tears the words hit home so well.

~Amey

I haven’t actually seen her today because I am still sick, but Phoebe’s grandmas inform me that she had a good day! She is sitting up, throwing the ball back and forth, turning pages in her book, watching cartoons and “waking up” more, and that news does my heart good.

Her CT scan of her chest and her abdominal ultrasound both came back normal with no sign of infection. Her oncologist says her high white cell count is a result of one of the chemo drugs she received and is not an indicator for infection. He also said that her breathing is improved although it is still labored and he is NOT concerned about tumor growth because the type of breathing she is exhibiting is not consistent with the breathing pattern caused by tumor pressure! THIS made me smile most of all today and allowed me to breathe a sigh of relief.

Phoebe's foot as it heals nicely!

This morning, the wound care people came by and removed the dead skin from Phoebe’s hands and feet and they look amazing. The doctors were impressed with how quickly she healed up and how easy the whole process turned out to be.

Nathan’s Mom pulled a 3 nighter with Phoebe because we have been sick and that is no easy task in the ICU. My Mom is on duty tonight and I am so thankful that Phoebe has such dedicated Grandmothers. I am really missing her and hoping that tomorrow I will be in good shape and ready to stay with my girl.

I’m sorry it has taken so long to get around to posting today. I have been resting, doing school with my boys and getting things in order to go back to the hospital. Thank you all for your encouraging words and posts and e-mails. They have been bright spots in my day and I have drawn strength from them.

This morning when I woke up I felt the Lord impress Psalm 112 on my heart. I’m not familiar with that Psalm by memory, and I was blessed to tears when I read it. It felt like a promise to me…

Praise the LORD.

Blessed are those who fear the LORD,
who find great delight in his commands.

Their CHILDREN WILL BE MIGHTY IN THE LAND;
the generation of the upright will be blessed.
Wealth and riches are in their houses,
and their righteousness endures forever.

EVEN IN DARKNESS light dawns for the upright,
for those who are gracious and compassionate and righteous.
Good will come to those who are generous and lend freely,
who conduct their affairs with justice.

Surely the righteous will never be shaken;
they will be remembered forever.
They will have NO FEAR OF BAD NEWS;
their hearts are steadfast, trusting in the LORD.
Their HEARTS ARE SECURE, they will have NO FEAR;
in the end they will look in triumph on their foes.
They have freely scattered their gifts to the poor,
their righteousness endures forever;
their horn will be lifted high in honor.

The wicked will see and be vexed,
they will gnash their teeth and waste away;
the longings of the wicked will come to nothing.

Amen! He is speaking to me and comforting me and guiding my heart like He guides the path of the waters, directing it and turning it. Hearing from Him this morning changed my entire outlook today and I am grateful for that!

Please pray for her throat to heal from the soreness and from being raw from the tube. Pray for her breathing to regulate and for her to be able to cough in a productive way. Pray that she will meet all of her goals to be able to move back to the oncology floor and out of ICU!

Thanks everyone!

Phoebe has had an emotional day and and so have I. Benjamin came down with fever and vomiting yesterday and then I started getting sick and when I woke up this morning, my throat was swollen, I had no voice and my face felt like it was going to explode. So, I didn’t get to see my girl today and from what I hear she had some weepy spells which in turn made me have some weepy spells not being able to do anything for her. We are a mess.

Ben is feeling better today and Nathan and I are battling this nasty cold or whatever it is. Phoebe has also had a fever today and they are taking more cultures. So far all of her cultures have come back clean, leading them to believe that she is still having some central fever.

Her chest and lungs have been very congested and she has not been able to cough it up the way she needs to because her muscle tone is out of shape and her lung capacity so diminished. They had her sitting up in her physical therapy chair for several hours today in hopes that being more upright would enable her to breathe more deeply and strengthen her lungs.

She is still having a lot of withdrawal symptoms and the weepy spells are all a part of that. She has mouthed “yes” and “no” but still doesn’t have a voice because of the irritation from the ventilator. She also turned the pages on her Grammy’s Nook book tonight to look at a story and that is encouraging.

To be quite honest, one of the doctors in the ICU came into her room a couple of hours after they removed the ventilator, assessed her while she was breathing erratically and her eyes were half mast and distant and stated that he thought the tumor was causing her to be like that and maybe this was her “new normal”. I flipped out. His comments have been the cause of a lot of tears these past 2 days and even though he recanted what he said after he assessed her again later and realized that she had a clear MRI ten days ago, it has left me shaken.

They are now saying that everything she is experiencing is from being on opiate pain killers and sedatives for an extended period of time and having withdrawals. She recognized her brothers today in a picture and whispered their names, so I know she is “there” and that the doctor was off in his assessment, but there is always the underlying fear of the tumor and his words planted a seed that I’ve been trying to dig up for the past 2 days.

I am praying that I wake up feeling better tomorrow. I am so afraid to get her sick on top of all her struggles right now, and yet she needs me and that feels horrible. If her groggy state continues she will have an MRI on Mon or Tues. They are expecting to see her wake up and become more interactive as these drugs leave her system although it will be some time still before she is weaned from the methadone altogether. The other important issue, is that she will start coughing for herself and controlling the secretions in her lungs so that her breathing can become clear and steady. If she clears up her breathing we will get to move back down to the Oncology floor on Tuesday.

Please pray for all the things I mentioned above and for our family to get well so that I can return to my girl.