Pray4carl.com

Carl’s Condition

(for the latest news scroll to the bottom)

Since the middle of January Carl has been complaining of stomach pain.  My first instinct as a father was that he was trying to get out of gym class or doing chores.  A little headache, slight fever and nausea the middle of February prompted a visit to the doctors.  Most likely a virus and a couple of days later he was feeling well enough to go to snow camp.  More stomach pain at snow camp so we cut the trip short.  By Tuesday he was well enough to go back to school, but would come home, sleep and did not want to eat dinner.  March 5 my school had a snow day and while I was home Carl’s school nurse, Mrs. Phelps called and suggested we have him checked out by the doctor.

The doctor felt around Carl’s belly and determined that his pain was concentrated on the right side.  Assuming gall bladder problems the doctor ordered an ultrasound and blood work.  Shelly took him to get the ultrasound on Thursday morning, after the ultrasound a CT scan was ordered and the radiologist & doctor recommended that Shelly take Carl to Children’s Hospital of Buffalo.  The preliminary diagnosis made by the radiologist was a bowel intersucception.

At Children’s Hospital the doctors agreed with the radiologist and decided on a procedure called a contrast air enema.  Carl underwent this painful treatment and it did reduce the intersucception by about 70%.  Because anything less than 100% is a failed procedure, the decision was made to try again in the morning. 

That next morning Carl wanted nothing to do with the pain caused by the air contrast enema.  Pastor Gilbert and I encouraged Carl to be strong and trust God who was cradling him in his hand.  Carl overcame his anxiety and agreed to the procedure.  A stat nurse came to transport him and Pastor and I believe she was an angel sent to minister to Carl.  She advocated for him, convincing the doctors to allow pain medication prior to the procedure, then she stayed with him while he endured the pain for a second time.  The procedure was able to reduce the intersucception by 95%, while not totally successful, the reduction resulted in less bowel needing to be removed.

Friday evening, March 7, Carl underwent surgery, a mass and about 8 inches of intestine was removed.  God answered our prayers because the operation was done on a bowel that was “full”, this type of surgery can often result in severe infection or a colostomy, Praise God neither were needed.

We stayed with Carl over the weekend encouraging him as he healed.  We didn’t give much thought about the mass that was removed.  We knew that there was a chance that it could be cancerous, but we were not assuming it to be so.  Tuesday we were made aware that the report came back from pathology and that the pathologist did see lymphoma cells through the microscope.  The doctors continued to explain a little about lymphoma to me and an overview of the treatment that would follow, as well as the different test that would take place to determine type and stage of the disease.

Shelly was at home tending to duties there when we got this news so we decided that we should speak with him in the morning when the three of us could be together.  I spent the night asking God for his grace.  I needed the Holy Spirit to minister to Carl through the night.  We had been reading the book of Job, from the Bible, together and Tuesday evening found us reading the part where Job’s friends blamed Job for the turmoil that he had to face, of course we know that this was not the case rather Job’s turmoil was because he was the most upright man on earth.  God had me choose to begin reading this passage earlier in the week for a very specific reason — he wanted to prepare our hearts and minds to yield to his will.

When we told Carl he did not respond, after we finished describing the disease and the treatment the best we could he asked us what his chances of dying were.  We simply answered him with reassurance that the doctors could treat this type of cancer and that he was not going to die.  We then discussed the importance of deciding to fight the cancer and that with God’s help he could overcome it.

The rest of this day was spent going over to Roswell Cancer Institute to have a pep scan.  The victory for the day was the removal of the NG tube and a drink of apple juice.  This was a real big deal for a 14 year old who had not had anything to drink for 5 days.  The pep scan showed some cancer in his lymph nodes in his neck, but no where else in his body.  Thursday was an uneventful day until it was time to move to our new “suite” on the 8th floor. Earlier in the day the surgeons had taken a culture to check for infection in the surgical wound.

On Friday, Carl underwent a spinal tap, bone marrow sample and a small operation to clean and redress the surgical wound.  The area of his incision had become infected and required surgical attention.  Our concern was that this infection would delay chemotherapy treatment.  The preliminary results of the spinal tap and the bone marrow was negative, the cancer had not reached there — Praise the Lord.

Saturday was filled with a steady stream of visitors.  This made Carl so tired that when it came time for his chemotherapy treatment he was sound asleep and when he awoke only one more syringe had to be emptied into his IV.  The Lord had answered our prayers — we asked Him to take away Carl’s anxiety and He put him to sleep for his first treatment.  What a Mighty God we serve!!!!

Saturday night into Sunday Shelly kept an eye on Carl watching for side effects from the chemotherapy drugs.  He woke several times through the night with intense sweating, but that was the extent of immediate side effects.  Sunday we were still concerned about Carl’s anxiety, I put out the prayer request just as most churches were meeting and praying, God answered immediately and Carl awoke from his morning nap in great spirits.  Several hours later the doctors took him of his morphine on demand pump and he has not requested any pain medicine since (it is now 8:30 Monday).  We took several walks and played a while in the game room, he is feeling better.  Carl was encouraged by the many e-mails he received Sunday evening.

Monday 3/17

Monday morning Carl is resting, he complained that he did not get any sleep overnight.  We anticipate him eating more today and becoming more active.  Carl did eat more through the day.  He had a cheeseburger for lunch then sent me to Louie’s across the street for another cheeseburger around 4pm..  All in all Monday was a good day not much pain, no anxiety and no procedures.

Tuesday 3/18

The doctors debated the best method to care for his wound.  They decided to continue with a wet to dry dressing that his Mom can continue to change at home.  We met with discharge planners, social workers and visiting nurse coordinators during the afternoon, we think he will be headed home on Wednesday or Thursday.

Carl’s next chemotherapy treatment will start Monday, he will be in Roswell for the whole week.

Wednesday 3/19

Carl and his mom spent the whole day Wednesday waiting to go home.  All Carl’s blood work and urine tests came back fine and he was cleared to leave.  There was a problem with his PIC line and the doctors decided to change it.  The doctors also changed his chemo treatment for next week to Wednesday.  The doctors told us to write nothing on our calendar in ink, only in pencil.

Thursday, Friday, Saturday, Sunday, Monday, Tuesday

Carl has been able to rest over the past several days.  He is growing stronger.  At times he is scared of the road ahead, we keep encouraging him with God’s promises.  Here are a few we have clung on to:

Ps. 56:3 — “What time I am afraid, I will trust in thee.”

Romans 8:28 — “And we know that all things work together for good to them that love God, to them who are the called according to his purpose.”

Phil. 4:13 — “ I can do all things through Christ which strengtheneth me.”

Wednesday 3/26  

Carl has entered Roswell for a week of chemotherapy treatment.  There is concern over his surgical wound and infection.  The doctors here at Roswell have decided that the best treatment for Carl’s wound is a “wound vac”, Carl had some discomfort with the fitting of the vac.  The dressing is changed every other day and can be painful because the wound heals quickly and the dressing must be pulled away from the healing tissue.  The wound is about 7cm x 5cm x 3cm deep, so it is quite large and healing is hampered by the chemo drugs.  We pray that the “vac” will work.

Later in the day we learned that today’s CT scan showed a reduction in Carl’s neck lymph nodes to a “non-concern pathologically”.  Praise GOD!!!  He entered the hospital well hydrated and ready to start chemo by the evening, not needing the whole day to hydrate. 

Thursday 3/27

Carl began the day with an innerthecal injection of chemo, some mild back pain associated with the treatment later in the day.  Carl had very little reaction to the other drugs.

Friday 3/28

Day 3 at Roswell and dressing change day.  The wound vac seems to be the ticket for healing the surgical incision.  The vac does cause Carl some pain and a lot of discomfort.  Please pray that this pain will go away.  Carl also had reactions to the chemo earlier in the day.  All in all he is feeling rather miserable.  Please keep praying and keep sending him emails to encourage him.

Saturday, Sunday 3/29,30

Day 4 & 5 at Roswell.  Carl has been suffering with nausea and painful headaches every time he stands up and moves around.  He has spent most of his time both days in bed sleeping. 

Monday 3/31

Carl had his final dose of chemo injected into his spine this morning and several hours later we were able to leave the hospital and come home.  It is so good to have him home again.  Please pray that his headaches will go away.  He has had on and off again (mostly on) headaches since Saturday afternoon.  The doctors took a CT on Sunday and found nothing suspicious, nonetheless he is still suffering, sometimes at a very high level of pain. 

Tuesday 4/1

Shelly took Carl back to Roswell in the morning for a shot.  When he got there he was dehydrated and in pain so they put him on IV fluids and gave him medicine for spinal headaches.  Around 4 pm he was able to get up and go home.  He did eat a little bit for dinner.  His spirits are very low as he suffers through this painful recovery from chemo.

Wednesday 4/2

Carl had another rough day suffering from a spinal headache.  He spent the whole day flat on his back unable to move.

Thursday 4/3

Shelly took Carl back to Roswell this morning because the intense pain from his spinal headache would not subside.  The doctors scheduled a procedure called a blood patch.  By evening it seemed that the patch was working somewhat as his headache is less painful.  He will end up spending the night in his suite at Roswell and hopefully be able to go home for the weekend.  Please continue to pray for his comfort.

Friday 4/4

Shelly and Carl headed from Roswell over to Children’s Hospital for a clinic visit with the surgeons that removed the tumor last month.  When they got there Carl’s headache had returned and he did not think that he could make it into the clinic.  Shelly put him in a wheelchair and wheeled him inside.  The surgeons immediately noticed his discomfort and had him admitted.  Their first concern was meningitis.  Carl had an MRI to examine his spine then another spinal tap to remove fluid for a pathology test.   The doctors do not believe that he has bacterial meningitis, but do think he has chemical meningitis that has resulted from the chemotherapy.  They gave him back his suite on the eighth floor and no sooner had he returned there from the operating room and he spiked a fever due to neutropena.  He will need to remain in the hospital until his counts are back up for at least 48 hours.

Saturday 4/5

All morning Carl was in pain from his headache and tired due to the lack of sleep overnight.  He finally got to sleep around 7am and slept rather soundly until late morning.  With the benefit of medicine on demand Carl began feeling better and by early evening was entertaining guest with his new found skill of pulling his hair out.  We figure that he will be bald by Wednesday.  Our biggest concern is Carl’s ability to move around,  the pain is manageable when he is in bed, but when he moves around the pain returns.

Sunday 4/6

Carl is getting better, still not moving around much.  All signs are that he is on the mend.  Praise God & keep praying.

Monday 4/7

Still on the mend.  We got Carl up a bit more today.  Carl’s pain medications were decreased, but his blood counts are still too low for him to go home.  Maybe Tuesday.  Carl’s surgical wound site is healing well, but the downside is that the dressing ends up healing into the skin then gets pulled away when the dressing is changed.  This causes a good amount of pain, like picking a scab, then the dressing goes back on the raw skin and stings like crazy.  Continue to pray specifically for this wound to heal.

Tuesday 4/8

Carl had a good day.  Most of his pain was associated with his wound site.  Blood counts were high today indicating an infection so he remains in the hospital until doctors can determine how to treat him. 

Wednesday 4/9

Today we hooked Carl back up to his wound vac, the procedure is quite painful to him and he is not convinced of the effectiveness of the treatment.  Carl’s blood counts came down a bit, but there is still no confirmation of an infection from the culture.  Infection is still the greatest area of concern.

Thursday 4/10

We heard that Carl may be able to go home so we got him out of bed, had him get dressed, put his sneakers on and when we saw the doctors making their rounds we went for a walk right by them.  It worked and by noon we were heading east on the Thruway!!  Several friends came to visit, he made more of a recovery in the first 3 hours home than he did the last three days at the hospital.

Friday 4/11

It is good to have Carl home we have been in or at the hospital 29 of the last 36 days.  Shelly & I never knew that sitting in a hospital could be so exhausting.  Carl slept most of the morning and in the afternoon several friends came by to play video games and visit.  We did find out from the hospital that in fact Carl does have a staff infection caught during his stay.

Saturday—Tuesday 4/12-15

Carl spent these days playing video, games, watching movies and sleeping.  At one point he was walking around the kitchen and his legs began to shake.  He struggled back to his bed and called us, crying.  I explained that his legs were not used to walking and just like his arms shake on the last rep of a bench press set, his legs were shaking because they were at their limit.  We then figured that he had been out of bed walking less than 10 hours in the past month whereas he used to spend 10-15 hours a day on his feet!!  Tuesday was his very best day, he kept busy from noon till after dark.  His day included a sanitary four wheeler ride up and down the driveway, for a little while he forgot he was sick and sported a very big smile when his mom came running out of the house screaming for him to STOP!!!

Wednesday 4/16

Carl checked back into Roswell today.  The first day is spent getting hydrated so that chemotherapy can begin.  Chemo began early evening with some real heavy doses.  All is well.

Thursday 4/17

Carl had his spinal infusion this morning and all seems to have gone well.  He has been taking his chemo very well.

Friday 4/18

Carl is a bit more tired today.  As of Midnight tonight we are half way through his treatments, by Monday when he goes home he will only have 2 treatments to go.

Saturday—Sunday  4/19-20

Carl spent the last two days sleeping.  The chemo saps the energy right out of him and sleeping seems to be preferred to being awake and putting up with some of the side effects.  The doctors do well controlling nausea and itching.  Carl has had some regular headaches, but they do not seem to be the same as the spinal headaches he had on his last stay.

Monday 4/21—May 6

Monday Carl had chemo administered by spinal tap in the morning and we were discharged early afternoon.  We arrived home around 4pm and Carl said to me. “Dad, drop me off at the barn so I can get the wheeler out.”  That was so much better to hear than “Get me back to bed before I puke.”  Carl has had a good week, he went to Prayer Meeting on Wednesday evening and blessed the hearts of all who saw him because of the answer to prayer that his presence represented.  We have been very pleased with Carl’s progress while home over the past 14 days.  Carl has been able to do many of the things he enjoys, but can only handle about 2 hours of the excitement each day.  He mustered the energy to visit school and see some of his teachers and friends on Monday of last week, only to spend Tuesday in bed from exhaustion and with sore muscles.  He bounced back with a great day on Wednesday, prompting me to call his tutor at school Thursday morning.  On Thursday he spent an hour at his sister’s track meet, recuperated on Friday, then on Saturday he was able to spend a couple hours at a track meet visiting and cheering on his fellow Hornets.  He bounced right back Sunday visiting Grandma’s for dinner and going to church for youth group.  Monday and Tuesday he met with his tutor and began his school work.  It is his desire to walk out of Roswell in a week and pick up right where he left off!!!   WE ARE PRAYING TO THAT END!!!

May 7—13

Carl’s spinal taps went real well and he did not have many difficulties during his stay.  The wound specialist made the decision to discontinue the use of the wound vac because his wound has been healing well.  Carl has been very tired sleeping about 19 hours each day.

May 14 — 16

Carl is still very tired and in pain from his wound.  He has only been able to get up and function for about 2– 3 hours a day.

May 17—25

Carl rested all day then went to the spaghetti dinner that was for his benefit.  He stayed the whole time, participated in some of the drawings then visited with his friends.  This activity wiped him out for all day Sunday.  The next week went well, Carl continued in his studies and was able to accomplish much.

May 26—29

Carl woke up with a sore throat, later in the day this worsened and at 9:30 pm he was running a fever of 103 so we took him into Roswell.  Carl remained in Roswell until Thursday getting mega doses of antibiotics. 

May 29—June 2

A time of rest and recovery between his visits to Roswell.

June 3-10

Finally the last round of chemo has begun.  This round caused Carl much suffering from nausea and some chest pain from gastritis.  As usual he slept most of the time waking up at the crack of noon and then back to sleep after dinner.  Each bag of chemo that was emptied was a blessing to his mother and I.  As the weekend came and went Carl finished his final dose and we trust God that he will never have to have another treatment for the rest of his life.  Carl will have an appointment later this month to have his “PIC” line removed, then a CAT scan early July.

June 11—Today

No news is good news.  Carl is on his way to a full recovery.  Pray that he does well catching up in his school work over the summer.

June 28 update

Carl has been recovering well.  His counts never reached the danger level and he was able to take his exams as a normal “KID” with the other students. (see below) Pray for him this week as he and his sister are at Word Of Life Camp in Schroon Lake, NY.  Pray that he will have the energy to make it through the week.  His mother and I are staying across the lake and will be keeping close tabs on him.

 

July 6 update

 

Carl had a great week at camp as did our whole family.  It was good to put our feet up and relax for a whole week without having to run to any appointments or emergency trips.  Carl has a CAT scan on Tuesday at noon we will update as soon as we get the results.  Thank you for your prayers.

 

 

Send Carl an email at:   carl@pray4carl.com