Kaylen Grace May

Kaylen was born October 18, 1998 and passed from our arms into the arms of our Lord Jesus Christ at 1:30 p.m.
September 10, 2003.


Kaylen was first diagnosed with Stage IV Neuroblastoma in March of 2000 at the age of 17 months. The main mass was located on her Right Adrenal Gland. Her cancer had already spread to her bone marrow, bones, and her orbit area was full of tumor. We noticed her eye sockets were bruising and bulging. This all came on very quickly. She underwent 6 rounds of Intensive Chemotherapy, surgery to remove her Adrenal Gland and several local Lymph Nodes(tumor involvement), she received a Stem Cell Transplant (which relocated us from Indianapolis to Cincinnati for a total of about 10 weeks that year), and then she received 20 Radiation treatments to her abdomen (twice a day under anesthesia). Kaylen fought the cancer and was in remission until May of 2002. Just two months after her wish trip to Give Kids The World in Florida she began to limp and had left sided weakness. Sure enough the MRI showed her cancer had spread to her Brain. A devastation. At this time of relapse Kaylen was 3 1/2. She underwent surgery to remove the tumor, then received 5 more aggressive rounds of Chemotherapy. She also received 20 rounds of Radiation to the tumor site. She was under anesthesia for her radiation treatments once again because she had to lie very still and wear a special mask. Scans were done throughout this treatment and there was some question if there was tumor once again. A biopsy was done in September of 2002 to the same area where the tumor was removed in May. Kaylen woke up from surgery unable to move her left side. A CT Scan revealed she had hemorraging. So she was unable to move her left side and she had been on lots of steroids which made her double her weight. But we got therapy going at the hospital and here at home. She was able to run again(with a bit of a gallop)and was relearning to use her left hand. Kaylen had lost somewhere around 25 pounds (back to her appropriate weight) and her hair was coming back again! She couldn't wait to have ponytails again!!
June of 2003 Kaylen was complaining of back pain. Three tumors were found on her spine. Kaylen received 15 Radiation Treatments this time around. On July 25th we found out Kaylen has a new tumor on the left side of her brain and a new tumor on her lower spine. Radiation for these began July 31st (11 rounds). Kaylen's eye began drooping and became puffy shortly after the July 25th MRI and got significantly worse so on August 5th. A CT Scan was done and it was found she did indeed have a tumor in her orbit area. Radiation was done to this spot as well. The month of August the cancer just continued to spread uncontrolably. Kaylen is my hero - she has withstood such horror. She was a fighter.
We thank all of you for all the support and prayers and friendship and love for the past 3 years.
Love and hugs to all.


KAYLEN'S TREATMENT TIMELINE
Present to Past

8/29/03 Decision made by us to stop any further treatments, signed up with hospice and began active pain medication
8/28/03 New tumor found between eye brows one-time high-dose radiation to site
8/14/03 Tumor found below left knee
8/12/03 Began radiation to left orbit area(eye socket)conitinue to radiate other 4 areas
8/08/03 Radiation began on tumor in leg
8/07/03 Tumor found in leg
8/06/03 Radiation to continue on tumor in brain, on lower spine, and new
radiation to begin on tumor in right orbit area
8/05/03 Tumor found in right orbit area next to eye
8/03 Radiation to left side of brain/Radiation to bottom of spine
7/03-7/21 Oral Chemo 20 days on 8 days off
7/03 Tumors found in brain and lower spine
6/03 Radiation to 3 tumors along spine
5/03 Tumors found on spine
10/02-6/03 Oral Chemo 20 days on 8 days off
10/02-4/03 Physical and Occ. therapy to left side
10/02-4/03 Scans every 3 months (in Indy)
10/02 Radiation to right side of brain
9/02 Biopsy leading to hemorrhaging/minimal use of left side of body
6/02-9/02 Chemotherapy
5/02 Surgery to remove very large tumor on right side of brain
5/02 Tumor found on right side of brain
1/01 Accutane of 6 months
11/00-3/02 Scans every 3 months (week long in Cincy)
11/00 Aphresis line removed
11/00 Radiation to tumor bed(adrenal gland)
9/00-10/00 Large Dose Chemo/Autogolous Stem-cell transplant in Cincy
7/00 Surgery in abdomen to remove several tumors (Right Adrenal Gland)
5/00 Stem cell harvest in Cincy
5/00 Stem cell Catheter(Aphresis Line)Surgery in Cincy
4/00-9/00 Chemotherapy
3/00 Biopsy and Central line Surgery
3/00 Original Scan in Indy
3/00 Neuroblastoma found in Kaylen

Journal

Saturday, October 18, 2008

Happy "10" Birthday Kaylen!
We celebrate you!!
We can only imagine what kind of Birthday party you would want today or what you would want your cake to be decorated as...miss you!
Lots of Love!
Daddy, Mommy, Sisters Rilie & Lydia and Brother Bobby


Wednesday, September 10, 2008

Five years. It is really bothering me that Kaylen has been gone longer than she was alive. But I have to keep reminding myself God has a plan. Time doesn't stand still, life and things and all the stuff goes on and I guess for good reason...just getting us closer in time to be with Kaylen. But she is missed as much now as she were then. Hearts still aching.
We miss you, dear Kaylen!
Love you lots,
Daddy, Mommy, Rilie, Lydia & your baby Brother Bobby

P.S. I often think of things that I want to express but when I get to the computer I draw blanks! A dear friend of ours is so very good at putting words down. She put it like this:
"I think Kaylen's gift to the world...to remind us how blessed we all are to have known her even for a short while, and to know how blessed we are to look forward to meeting her again through Jesus."


Monday, September 10, 2007

Four years. We miss you and love you!

"To everything there is a season, and a time to every purpose under the heaven. A time to be born, and a time to die; a time to weep, and a time to laugh, a time to mourn, and a time to dance...Ecc. 3:1-4 KJV

Life hurts.

In the beginning we were never quite free from the gnawing sense of loss, the feelings of dread and anxiety. The tears came until they could come no more. Grief is not only difficult to experience...it is not easy for everyone watching, too. Those who come to comfort, forget that the death of a child is obscene. It is out of the natural order of the only world we know. Yet, parents may be told, "It is God's will," or they may be encouraged to rejoice that their child is in heaven. The "comforter" fails to realize that heaven is apart from them. It is that very separation that we mourn. Mourning is a very human thing to do.

But thank goodness We Have This Hope.....

"For the Lord, Himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first. After that we who are still alive are left will be caught up with them in the clouds to meet the Lord in the air. And so we will be with the Lord forever. Therefore encourage one another with these words." I Thess. 4:16-18 NIV

What could possibly fill our hearts with more hope than the knowledge that we shall someday see those precious loved ones again? What could possibly make heaven seem more real than to have our treasures there? The only cure for grief is the return of that precious loved one.

That is why nothing compares with these promises which provide the clearest evidence of why believers grieve not as others who have no hope. Those who believe not yearn for precisely what we have been promised: a reunion with our beloved where there will be no more tears, nor sorrow, nor pain.

HOPE integrates and makes whole - we have this hope! We have continued on with this life and making the most of it. We have continued on and to make this current life of ours the best we can, because of this hope filling our hearts we can continue on knowing one day we will meet up with with our loved ones.

The May Family
Rick, Julie, Rilie, Kaylen, Lydia & Baby Robert on the way


September 16, 2007

Treasure each other in the recognition that we do not know how long we shall have each other. Joshua Loth Liebman

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Hospital Information:

Heaven
Home Address: 11334 Bloomfield Dr. S.
Indianapolis, IN 46259
317-862-1363

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E-mail Author: rickandjuliemay@comcast.net