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.

8 Days Post-Op

Good Morning Family & Friends,

We are still in the hospital. After undergoing a series of tests (ultrasound, xray, urine, blood) we are still unsure of what is causing Elijah's pain. We do know that b/c of his immobility, gas remains trapped in his little body and because of the morphine, he continues to be constipated. The results from the tests for infection should be back later this afternoon. Postoperative testing of the liver, kidneys, and lungs are good.

This morning they have once again discontinued the Morphine, increased the Oxycodone, and added gas relief and enema. Our hope before days end is to at least get him sitting upright with minimal pain and to sleep more than 10 minutes without a pain spasm.

Please pray for Elijah's pain relief so he can move forward with the healing process and prepare his body for chemo therapy. Also pray for patience as we continue to rely on the surgical teams' assumptions - trained to rule on the side of medicine and disregard maternal instinct.

I am gathering all of your emails and blog posts in a scrap book for Elijah so please continue your wonderful and thoughtful messages.

All of my love and sincere appreciation,
Dawn

Still in the Hospital-Quick Update

Elijah was not able to be discharged from the hospital today. We found that the great physical strides he made yesterday were due to the increase in pain management medications from the previous day. Although his oral meds were increased in dose and frequency, he was taken off all intravenous medications to prepare him for home - this caused a dramatic increase in pain which in turn decreased his appetite and ability to be physically active. This change in drug type and administration has set his recovery back quite a bit.

We hope to be home tomorrow or Friday.

A Good Day!

Our Dear Family & Friends,

The measurement of a good and bad day during Elijah's hospital stay is simple-was he in pain or was he able to rest. Not only was he able to rest, he was able to walk (first time since last Thurs.), sing (we got about 3 encores of row row row your boat), & poop! (which is a major requirement for release).

We will be going home tomorrow-even though his IV has been reconnected due to a lack of fluids.

Here is an explanation of the histology findings. I will be updating the blog daily/weekly as we continue on this journey:
Approx 90% of the cells in & around the tumors were fetal histology-meaning "good cancer cell". This type of cell usually does not regenerate, does not need additional therapy and just needs to be monitored through blood tests. Unfortunately, the 10% of embryonal histology found ("bad cancer") means there is a possibility of regeneration and chemo therapy is the only method of reducing that risk.
Elijah will be going in for surgery to insert a port-o-cath in the next week to 2 weeks. He will then begin chemo-therapy consisting of a 3 day hospital stay and a 4 treatment per week regimen. This "cycle" will occur every 3 weeks for approx. 3 months.

Our prayer for the coming months is that God surrounds Elijah with an impermeable wall of protection where the very high incidence of hearing loss, renal/kidney issues, and neurological problems that result from chemo therapy in his age group - do not affect him. That he remain untouched by the other side effects such as vomiting, nausea, hair loss, loss of appetite/weight loss, etc...and that we remember - whatever he does endure is for a short time and a sacrifice that must be made in order to live a long and healthy life.

Thank you for the hospital visits, the messages, the emails, and voicemails. Your prayers are necessary and appreciated. THANK YOU!

A New Day!

Dear Loved ones,

Your prayers prevail again!
Elijah's pain has been somewhat suppressed with an aggressive regimen. The pain management team here is great - they've found the right combination to make Elijah much more comfortable.

As my son continues to expand his vocabulary, I find myself asking him things - "who is mama's big boy?" "Where's Daddy?" "Where do we play basketball?" Not one day had gone by that I didn't hear his beautiful little voice. Today was the first day I heard it since Thursday morning. "Mama, Daa-dee, Nana, cookie, and tank-chu". Some people have favorite numbers, favorite days of the week-I now have favorite words...

There were quite a few other accomplishments today-He was able to stand in his bed today! Although he was quite wobbly, he stood, holding on to Nana for a good 15 minutes before falling asleep (see pic). He also had his first meal. It's a good thing he's been sedated b/c had he known he hadn't eaten since Wednesday afternoon, we would all be begging for an "aggressive regimen of pain management"! :)

The only "unfortunate event" of the day was the IV incident. Apparently his IV came out of his ankle which would not have been cause for concern except his pain meds are being administered through a demand pump-through the IV. So once again he had to have a visit with the "IV Therapy Specialist". Elijah found absolutely nothing "special" about the specialist.

We should be home by Wednesday. Our sincere gratitude and love to you all.

Pray for Pain Relief

I've added a few albums of Pics of Elijah: http://photobucket.com/ElijahWilliams

After more than 6 hours of shear agony, Elijah is finally resting. The epidural has eased its way out and what was once a numb area with no indication of trauma other than a large surgical scar, now is a source of concern for all and intense pain with every deep breath for Elijah. Over the course of several hours he has received Morphine, Toradol, and Lortab. What finally gave him relief? An intravenous dose of Benadryl! Although he's been asleep for less than 30 minutes, I'm now hopeful his pain will subside with each passing hour.

Anesthesia has been called for a new consult in the morning to assess the source of the pain (the intensity and location may indicate more than the obvious).

As always you are appreciated and cherished. Please continue sending out your love and prayers.