It’s kind of nice coming to post here in the evening and not having much new information to report. It reminds me that life “out of the woods” is much more simple than the past few weeks have been. Phoebe is making small improvements each day and that helps me rest easy when I am home with the boys. I even forgot my phone in the other room a couple of times today and I NEVER do that anymore. My phone is usually glued to me just in case there is there is a change in Phoebe’s status or an emergency.

Phoebe had lots of visitors today that kept her awake and interacting which is GREAT because she is asleep now and I am thinking *maybe* I will get some sleep too. I won’t hold my breath though…I know Phoebe and her wooly ways! She will wake up for her nightly jewelry party just as soon as my breathing gets rhythmic with slumber. I have a feeling about this.

Her sodium is in a good place and will hopefully stay that way. Her oxygen has been tapered off again and she is holding her own, and…drumroll please…she ATE APPLESAUCE and DRANK WATER! Go Phoebe!! She can swallow again! Her food of choice, spaghetti, will have to wait, but she passed the swallow test and now we challenge her a little more each day in her eating and drinking.

Her sodium seems to be a in a better place today and that just leaves her lungs and of course regaining her physical strength and walking. Her lungs are still very small which only allows her to take short breaths and work harder to oxygenate her body. They shrunk down and got smooshed up while her body was so full of fluid and she was lying down in bed for so long intubated. She really needs to take deep, long breaths and get them to expand and open up, but it’s not something we can ‘make’ her do. Getting up and walking would do wonders for her lungs and this is why her physical therapy is so important, but it could take some time. Or we could see a miracle..could you pray for Phoebe to walk? And for her lungs to go back to their normal capacity? She is SO close to being approved to go home with just a few more baby steps!

Well, just as I suspected Phoebe has shaken off her sleep and is ready to visit. Jewelry party here we come!

~Amey

Just a quick post before I turn in for the night…

Phoebe and I had a great day together, she was awake most of the night and she kept me on my toes playing ball, putting her jewelry on, coloring, and watching Backyardiagans. She spoke so much more last night than I have heard her yet. It was awesome. I didn’t even mind that I only got 1 hour of sleep, we were having so much fun!

When morning came Phoebe decided it was time to get some shut eye, and there I was..still awake with the nurse and the day just getting started. Such is life with Phoebe the nocturnal. Nathan came up for Phoebe duty tonight and we had dinner together before I went home. Nathan’s Dad is here to help out this week which is a blessing for all of us.

Her PICC line was removed today, so she is back to just having her port which is nice. Just 2 weeks ago she had lines in both hands and feet and a central veinous line in her groin. I am so thankful for where we find ourselves today! Our goals for going home are: successful ng tube feedings, breathing well and oxygenating well, and the biggie; sodium. Right now she is having a lot of sodium fluctuation which she can’t do if we are going to take her home. She needs to be on a predictable 12 hour schedule without swinging between high and low sodiums. Please pray for all of the above.

Thanks ya’ll for continuing to stand with us through it all.

~Amey

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