Surgery #8! Not Just a "same day"...

Well-what was to be a simple same day surgery - an adenoidectomy and ear tube replacement, turned into an overnight (hopefully just one night) hospital stay.

The short of a long story: We arrived at the hospital at close to 7:00AM this morning, surgery did not begin until 11:00 but was completed by noon. The ear tube replacement was textbook but the adenoids were so enlarged, removal was much more involved than anticipated. As most of you know, Elijah's BPD is cause for concern with anesthesiology prior to every surgery - this time rightfully so. His O2 saturation remained around 85 (low) while his heart rate remained elevated (around 140) after surgery.

Due to the O2 complications we stayed in recovery well into the evening. Unfortunately, once his O2 levels stabilized at 90 (still considered low but not of great concern w/asthma) he spiked a fever - peaking at 102.

We are now in room 523 at Southern Hills Medical Center (our first and prayerfully our last encounter at this hospital) and will remain until his O2 saturation stabilizes at around 95-98 w/out the aid of oxygen and his fever remains below 99.5 for a period of more than 6 hours.

I will keep those of you in contact posted. Thank you for the well-wishes and love. Whatever the battle - Elijah's armor remains impenetrable because of you.

Moving On...

Family and Friends,

Thank you for your continued prayers, love, and support! Elijah is doing really well. We recently went in for his monthly ultrasound, CT scan and blood work and all except the iron levels are normal! We were cleared to move to quarterly scans!!!!! YAY!

We truly hope this New Year is bringing each of you a renewed love for the life you've been blessed with! Live it to the fullest and view each day as the greatest gift received!

Many Blessings to you and your families.

Hippeee Burfdey!

Hello family and friends!

Just a quick note to share some pictures with you. Elijah is doing great! His last Ultra Sound and XRay were all clear and his health has been fairly good over the past few months.

Elijah had his first real party (outside of daycare) to celebrate his 3rd birthday!

We love you! Hope you had a wonderful Thanksgiving. Have a great Christmas and New year!

Last Surgery...Done!!!!

Friends & Family, The time between posts is more and more lengthy. Please know that I think of you all often but this is truly a case of no news is good news!

Elijah had his last surgery (prayerfully) on September 12th. He had 2 surgeons working on 2 different areas during the surgery. The first surgery was to remove the port that was implanted for Chemotherapy treatments and blood draws. The second was the 3rd and final surgery to correct a urological problem. As of his 1 month check up both were a success! We will not be 100% certain that the later surgery was completely successful until he "pee-pee's in the potty" but that's an entirely new hurdle mama has not begun to approach just yet.

Elijah is doing really really well. Diego (and occasionally Dora) rule the world and he's rarely without his guitar in hand. We haven't figured out how he learned to "Rock-Out" as he says, kicking his leg up while strumming the new Elijah-sized guitar daddy bought him but I have a feeling lessons are in his near future.

He's still loving his little brother. However, the more mobile Jacob becomes the more intolerable big brother is becoming!

When God revealed the cancer in my baby's body, it was the size of a softball. It was attacking his liver and closing in on his gallbladder. Had it not been discovered the chance of removing it completely would have gone down to less than 25%. When he went into surgery, there were 2 cancerous masses, both able to be completely removed along with 1/2 of his liver, which by the way regenerated to 90% in less than 6 months. During chemo, he was along side children older and younger than he, some with less of a chemotherapy regimen but many with a much more vigorous and arduous journey. Elijah is cancer free, healthy, happy and beautiful. By His Mercy and Grace I'm going to be here to see him fight with and protect his little brother, get in trouble and do well in school, break hearts and get his heart broken, make me mad as hell and make me cry with joy, be a success at whatever he chooses, and be a great husband and a dedicated father. I say all of this to say Thank You for seeing him through and watch out for a tremendous future!

My heart still gets heavy at times when I think about how much you care for my precious baby boy. thank you thank you thank you.

UPDATE UPDATE UPDATE!!!!

I cannot believe it has been over 2 months since I posted to Elijah's Blog. It seems odd that during a crisis or in the midst of turbulent times the need to communicate emotion is so tremendous...now during the calm I find myself just being still. It's a fantastic feeling.

UPDATE:

Elijah had his scheduled CT Scan, XRay, and Ultrasound recently. It was one of the LONGEST days we've spent at Vanderbilt. Especially since the CT Scan is sedated which means Elijah cannot eat. A two year old at 10am coming out of sedation with an empty stomach is no cake walk believe me.

All results came back great with two exceptions. His iron is still critically low. So much so the doctors are considering injections! Also, the Ultrasound showed swelling in the abdominal lymph nodes. I don't remember my reaction to that news-I do remember the past 6 months flashing before me and a feeling of helplessness as I thought of Elijah possibly going through treatment again.

Thankfully, we returned for blood work a few days later and his AFP levels (tumor markers) were at 2.2 which is extremely low meaning no cancerous tumors detected. The oncologist believes he may have caught a stomach bug, which just so happened to have been going around daycare that very week. His immune system was strong enough to fight off the symptoms but the infection was lurking in his little tummy.

Elijah is doing fantastic. He's such a big help with his little brother Jacob and absolutely loves school. He sings ALL THE WAY HOME from daycare...EVERY DAY, and hopping while simultaneously saying "Hop, Hop, Hop" is still his preferred mode of movement.

Elijah has a surgery (his 7th) coming up in September (unrelated to the hepatoblastoma). I will post updates as the surgery nears.

Thank You for your continued prayers. We love you!

Back at school and LOVING IT!

Hello all!

We hope you all are well and enjoying the warmer weather.

Elijah has been back at school for 2 weeks now! The first week was extremely difficult (more so for me I'm sure). Our morning ritual of waking at leisure to Daddy's voice or Sheba's bark, eating a full breakfast, then waiting in anticipation for the next Barney episode was replaced with a firm shake of the alarm clocks' scream, a bag of cheerios and sippie of milk, and a mad dash to get in position to make the 45 minute haul to school before 8am.

DID I MENTION THE GUILT????

Elijah made certain that I knew...EVERY MORNING...that he was supposed to be glued to my hip-not away from me with a bunch of little people that were obviously not going to kiss boo-boos, laugh at his indecipherable banter, and give him free reign over every toy in eyesight.

So although the first week of school was very difficult for Elijah, his second week and start to the third has been much smoother. He awakens with no objection in the morning, he walks his brother to his class then walks mommy to his and even says bye! He's eating well, playing with his friends well, and has been "Very Polite"...so the teachers say. ;p

Jacob has been having a ball in school. He has the same teacher Elijah did at that age so the spoil factor has gone up exponentially! He's proving to be every bit of the flirt and charmer his brother is.

Elijah's health continues to improve. The last Xray and Blood test (just last Friday) revealed he is recovering well. We are still fighting the anemia/low iron and now have to include hearing tests to the regimen as his last test revealed hearing loss at a high frequency.

We continue to receive well wishes and inquiries and I am so very appreciative. Thank you for your continued love and prayers and I will keep you posted!

~Love Dawn

All Clear!

My prayer this evening included a special thank you-thank you for the words God has given each of you to pray for my son. It's your prayers, your love, support, and strength, and God's grace that got us to this place.

Elijah's CT Scan was all clear! His hearing test is showing loss but only at the high frequency levels. His blood work is phenomenal-the Dr.s continue to be amazed at how stable his levels are. His energy is off of the charts, his appetite is slowly returning, his hair growing back and he's already gained a half of a pound since his last treatment! We are still struggling with his iron levels and getting him to take his meds.

He will continue bi-weekly blood tests, monthly xrays, quarterly CT Scans, and yearly kidney and hearing tests for quite some time. He has been cleared to return to civilization. HOORAY!!!!! Daycare...WATCH OUT!

I will continue posting every now and again as he has one more unrelated surgery in the next few months.

My heart swells with love and adoration for you all. Thank you Thank you Thank you!

ALL CLEAR!!!

Family & Friends...

Please forgive me for not writing in over a month. Managing a 2 year old and newborn is a bit more challenging than I had anticipated. ;)

Elijah's last outpatient treatment was March 16th and was fairly uneventful. His counts were up as well as his spirits (as usual). His favorite nurse made certain she was there to give his last treatment and to meet his new little brother! A few weeks passed then it was time for his first post-op blood work and CT scan. Although his blood work looked great, he was still not released to daycare so I must continue to monitor his interactions. The CT scan was all clear and will be repeated every 3 months. His blood will need to be drawn every 2 weeks for awhile then monthly then with every CT Scan. We go back for more blood work on the 24th of March as well as a hearing test (as hearing can be affected by the chemotherapy).

Although his appetite is still down, his hair is starting to grow back, his joint pain is lessening and he's running, jumping, playing, laughing, singing, and tiring me out daily!

I will continue to update the blog although it may just be monthly.

Thank you all for your love and prayers. We are immensely Blessed by your presence in our lives.

Here are updated pics of Jacob & the family: http://s216.photobucket.com/albums/cc157/dawnmoire/Jacob%20N%20More/?albumview=slideshow

The Last Stay

Family & Friends,

This last weekend seemed to have taken a lifetime to get to. Elijah was neutropenic last week and we had to postpone his last inpatient chemotherapy. Now that its come and gone, this leg of the journey seems to have flown by. I suppose that's God's way: During the struggle question your strength-Live through it and know you can carry a much heavier load because it all rests on his shoulders.

This was by far the most difficult inpatient stay. Elijah's reaction to the anti-nausea meds were extreme but his nurses were amazing. As soon as we checked in they were showering him with love, affection, and attention, They even had a hopping (his new favorite pastime) contest down the hallways which I was thankful for because he was tired out quickly!!

We spent Friday evening and Saturday visiting and saying goodbye-the playroom, the quiet room, running the halls, etc... Not sure if he knew it was his last stay but he took advantage of every chance he had to run, run, run. (Click on the link to see pics) http://s358.photobucket.com/albums/oo24/ElijahEzekielWilliams/Last%20Chemo/?albumview=slideshow
Elijah has 2 more outpatient treatments and then he is done with chemo!!!

As usual, I have no words worthy enough to give you the Thanks I wish I could. Your prayers have kept him free from infection, sickness and unbearable side effects. Thank You for keeping my little boy close to your heart. I am so undeserving of your love and support and I Thank God for you always.

Elijah's Baby Days

Family and Friends...

I hope this email finds you all in great spirits and good health. It has been some time since I updated the blog but I'm sure you will forgive me since I was bringing Elijah's little brother Jacob into the world!

Elijah's 3rd inpatient treatment went well. He did get sick but as with the last treatment, it did not hit until the last day. We are seeing some of the longer term side effects of the chemotherapy take its toll on him now-sunken eyes, more joint pain, and constipation. However he continues to be in good spirits and is still the strongest little soldier I know.

2 days after I returned home from his inpatient stay, I went into labor and delivered a very healthy 8pound, 21inch long baby boy-Jacob Josiah Williams. Elijah is an exceptional big brother. He kisses him every chance he gets and loves the fact that they both have "Papies" (pacifiers).

Elijah has only one inpatient treatment and 5 weekly treatments to go! Upon completing treatment he will have a CT Scan, Kidney scan, and several blood tests then will continue monthly blood testing for 6 months before scaling back to every 3-6 months.

What a journey! We are almost to the end so please continue to pray us through. We love you all.

~Dawn

-go to: http://s216.photobucket.com/albums/cc157/dawnmoire/Jacob%20Josiah%20Williams/?albumview=slideshow for pics of the new baby!

Moving Right Along....

Family & Friends,

We pray that you all are doing and feeling well. We are doing well-basking in the Glory of A New Day. A new day for our children, our communities, our country and world.

Elijah is doing great although he still has pain a few days after his weekly treatments, a limited appetite, and has resigned to refusing any and all oral medications. He had a kidney scan and weekly chemo treatment last Wednesday, he will have a CT Scan this Wednesday and will be admitted for his 3rd of 4 in-patient treatments this Friday.

We are finally coming to the end of this arduous and incredible journey!!!!

As always, your continued prayers and support are such a Blessing to us. Thank You!

2nd Cycle Down...2 to go!

Hello All & Happy New Year! We pray everyone is enjoying the first week of 2009 in good health and great spirits!
Here is my bald, beautiful and very silly baby at the pediatric oncology clinic Monday.

As you know, Elijah's was unable to be admitted for chemotherapy for over a week now due to very low white blood cell counts. Well his counts were high enough to be admitted for his second cycle Monday. We are truly grateful for the fantastic pediatric oncology team at Vanderbilt Children's Hospital. A Doctor recommended an anti-nausea/vomiting regimen called BAD-a combination of Benadryl, Ativan, and Dexamethasone. Although he did have some vomiting and nausea today, it was much less than what plagued his little body during the 1st round of chemo. However, the side effects of the steroid (dexamethasone) was unexpected and almost impossible to handle; extreme mood swings and generally inconsolable outbursts. All things considered, he seems to be feeling really good right now which is an absolute Blessing!

2 cycles down...2 more to go!

All of our Love,
~Dawn

On Hold...

Hello All!

We pray everyone had a Blessed and safe Christmas! We had a wonderful Christmas and I will post a pic or two of Elijah enjoying all of his toys soon.

Here's a pic of my little bald baby and his twin! His daddy vowed to go bald as well-and will stay that way until his "little buddy's" hair grows back.

We were to be admitted for his 2nd cycle of treatment Friday but unfortunately blood tests revealed that he is Neutropenic-meaning he has an abnormally low white blood cell count. He has more than likely been exposed to a virus of some sort that his body must clear before the next round of chemotherapy. With a low white blood cell count he is unable to fight off infection of any kind but thankfully, he is not exhibiting any additional symptoms such as fever, cough or cold so we are hopeful it is just something very minor that will clear in the next few days. We can carry these viruses and pass them to each other and never know it thus why I must limit his exposure to others.

We will go back to the oncology clinic Tuesday morning for testing to verify that the virus is gone and his white blood cell count elevated. If all is well, we will be admitted immediately.

Thank you for the continued support, love and prayers. We especially thank those that sent Elijah gifts, cards, and messages for Christmas. It truly brings our hearts joy to know how loved and adored he is.

All our love-

Quick Update-

We've made it through the first week. The first few days were spent managing nausea and vomiting, the past week has been spent trying to get a handle on other side effects taking over Elijah's little body. Pain management, appetite and alleviating constipation may be a consistent issue and is proving to be difficult and heartbreaking.

Elijah has never seen snow before so Nana & I took him outside this morning to enjoy.

Have a wonderful weekend!

Chemo Begins

Hello All,

We hope your week is going well.

There were no complications with Elijah's surgery to place the portocath Friday and we were admitted that evening. Here he is giving us a glimpse into his future as "Dr. Cutie-Pie Williams" shortly after we were admitted.

Elijah will be receiving 3 different chemo therapy drugs throughout the next 4 months. Although he receives 2 of the drugs once per week- every week, he must be admitted inpatient for 3 days and 2 nights every 3 weeks due to the severity of the side effects of one of the drugs (cysplatin). This drug was administered over several hours beginning at midnight on Friday. We were elated when more than 8 hours passed with no side effects. Unfortunately that elation was short lived as sickness abruptly awoke him from a restful nap after an exhausting day of charming the nurses and befriending several fellow pediatric oncology patients.

Saturday afternoon through Sunday morning were spent trying to manage Elijah's nausea and vomiting. By Sunday afternoon he was back to ruling the hallways and conquering the hearts of every nurse on the floor. The other 2 drugs were administered Sunday evening with no complications.

We would have been home Sunday night but his oncologist ordered a CT scan for Monday morning to make certain none of the "bad cells" formed into a tumor over the 6 weeks between surgery and this first chemo treatment. By Monday evening we were on our way back home. Other than an extreme loss of appetite and another bout of vomiting on the way home from the hospital, he seems to be doing well. God has Blessed Elijah with an amazing resilience and immeasurable strength.

Thank you all for fortifying his strength through your love and prayers.

~Dawn

Thanksgiving...Still continues

Good Morning all!

I pray our family and friends had safe and undisturbed travels this Thanksgiving. Randall, Elijah and I spent the holiday with Randall's family in Alabama. Elijah had a ball dancing, singing, and playing with his little cousin Amber, aunt, uncle and "Me-ma". He is back to 100% and is doing very well. Here's a pic of Elijah having fun in the leaves in his Nana's backyard the week before Thanksgiving.

Before the holiday we had our final pre-treatment appointment with pediatric oncology. The treatment begins first with surgery to implant the Port-O-Cath this Friday morning then chemo begins that evening. The regimen will be as follows:

Day 1-admitted to hospital, IV hydration then given the worst of the 3 chemo drugs

side effects are monitored and controlled for 48 hours.

Day 3-2 other chemo drugs are given then released from hospital.

Week 2-1 outpatient visit for 1 chemo drug

Week 3-1 outpatient visit for 1 chemo drug

Week 4(Day 21)-Cycle begins again with 3 day/2 night hospital stay...

Elijah will undergo 4 cycles of treatment-meaning he will have a total of 4 hospital stays, and a visit to the hospital for 1 weekly chemo drug treatment every week from Dec. 5 through the first week of March.

Our prayers continue to be Elijah's full recovery and healing. We ask that our friends and family pray that his body withstands the effects of chemotherapy treatment. These drugs are labeled poisons-even by the oncologists due to not only the short term side effects but long term permanent effects. Some of those are:

Nerve Damage

Hearing loss

Renal failure

Growth

Cardiovascular

Respiratory

Thyroid

Secondary Cancers

Chemotherapy drugs are effective at killing cancer cells, but they also damage normal cells, which can cause side effects. Drugs used in cancer chemotherapy attack cells that are actively dividing to produce new cells. These drugs are useful because cancer cells reproduce more quickly than normal cells.

Chemotherapy also causes a drop in white and red blood cells. The side effects caused by low blood cell counts will likely be at their worst when the White Blood Count, Red Blood Count, and platelets are at their lowest levels. Because of this Elijah will have very limited contact (no contact if you haven't had a flu shot) with others during the duration of Chemotherapy. Although he will be on antibiotics to lessen the possibility of infection for the duration of therapy, a low white blood count means an inability to fight infection so even the common cold could be life threatening for him.

Thank you all for your concern about my health and the well being of Elijah's little brother due on Valentines day. We are both doing well. We are prayerful that "baby brother" will stay put for a few more months :p I'm sure he will - when I ask his big brother where his little brother is, he simply lifts my shirt and gives my belly a kiss with a big "mmmm-waaahhh" sound!

Happy (late) Thanksgiving wishes to you all. We love you dearly.

~Dawn

3 weeks Post Op

Our dearest Family & Friends...

I hope this message finds everyone doing well, feeling great and ready for the Thanksgiving holiday.
It's been about 3 weeks since surgery and Elijah is doing well. He is still challenged physically by a few things but is almost back to 100%! His appetite is great, he's sleeping fairly well, and he even enjoyed a play date this weekend with his buddy Alison.

He recently had the picc line removed and will only need one more blood test this week to make sure his little body is free from infection. He will then be monitored for a few more weeks to make certain he is able to withstand the effects of chemotherapy.
Please don't forget I will be making a scrapbook for Elijah of all of your wonderful comments on this blog so please leave a message. Simply go to "comments", write your comment (don't forget to sign your name), then click "anonymous" to post without having to create an account.
Our sincerest gratitude for all of your prayers-please keep them going,

~Dawn

The Great Escape

We are finally home!!!!

Elijah was able to have the Pic line inserted for antibiotic therapy at home. Due to the infection in the blood he has been under strict monitoring and since his fevers continue to spike, a CT Scan was ordered to rule out the spread of infection to his heart. Although the scan showed some fluid collection where the right lobe of the liver was, the overall results from the scan were favorable and we were released around 6:30 pm.

Elijah still has some pain - the source we can't seem to identify. But his appetite is up, as are his spirits, and we are so grateful to have him home.

He has more testing (renal, audiology, lab) on Friday. Once those results are known we will have a plan of action for chemo and followup therapy.

Thank you for your prayers, support, and love.
Dawn~

Day 12-Quick Update

The glimmer of light that began to shine at the end of the tunnel quickly disappeared this morning. At 6am we were informed that a pic line would need to be inserted for IV therapy at home. The protocol for the type of blood infection Elijah has calls for 14 days of IV antibiotic therapy. Thankfully, we can receive the therapy at home with the assistance of a Home Health Nurse.
Since this is a minor surgery done under sedation, Elijah had to go without food for at least 6 hours prior to surgery. By 1:30 in the afternoon we still had not been taken to surgery. After requests to Elijahs nurse and finally a call to his surgeon,we were disappointed to find out surgery had been scheduled for tomorrow morning at 8am.
Since the plan changes as often as the person that delivers the message, I will not committ to us being home tomorrow, although I will admit to being hopeful.

I pray I will be posting a "Welcome Home Elijah" message tomorrow.

Day 10...and counting

We hope you all are having a great Sunday.

Elijah has had a difficult few days but we are so fortunate to have found the source of his pain. Lab results revealed a bacterial infection in his blood which causes, among other things, a slow down in bowel activity. Gas & bowel was building with no way of escape. While they determine the strain of bacteria, he was started on vancomycin, an antibiotic that eradicates all strains. About 8 hours after the first dose, he began to feel better. Unfortunately his pain was still not under control Friday evening and he missed his 15 seconds of fame when 2 of the Nashville Predators dressed as Tigger & Pooh, and the local News came to his room to 'trick or treat' on halloween.

After 9 days, he & I finally felt the warmth of the sun! We went on a little field trip to the beautiful coy pond. Here he is on Saturday with Daddy, eating more of the crackers than he fed to the fish.

Today he was feeling well enough to go to the Play room. His legs are still a bit wobbly but he played hard enough to take a 3 hour nap afterwards. He then woke to a visitor-one of his favorite friends Alison who sang, danced and fed him corn pops! Her mommy and I will be having a little chit-chat about the corn pops later :)

Although we struggle to keep his temperature under 102, we do expect to go home in the next day or 2. Due to the infection, surgery for the port-o-cath and chemotherapy treatments will be pushed back at least 2 weeks.

As always-your concern for Elijah is treasured and your thoughts and prayers are appreciated.