Saturday, April 15, 2006

Hunter's Leukemia and Bone Marrow Transplant Timeline

August 2010:

10th: Waiting to learn if Hunter is a fast or slow responder to treatment.

11th: We learn that Ronin is probably a match and that Hunter's leukemia cells have gone from 90% to 20% which means he is responding well.

14th: Hunter is eating well and putting on weight... starting to feel better.

15th: He was quiet all day.

17th: Another bone marrow biopsy: 3rd surgery in two weeks.

17th: Received chemo

18th: In a lot of pain: tummy, hip, and back.

20th: Dr. not thrilled or discouraged by biopsy results, might need extra 2 weeks of induction

21st: Fever but improved counts, got to leave his room, take a walk, and go upstairs to play

23rd: Counts up, feeling lonely at the hospital.

24th: Hunter comes home for the first time since diagnosis. Dad shaves his head.

25th: Slowly walked to the mailbox and watched his baseball team play a game.

26th: Home health comes to access Hunter's port, flush it, and get some blood.

27th: Counts look great!

28th: Attended homeschool family picnic.

30th: His thigh muscle is bothering him a great deal.

31st: Another bone marrow biospy and chemo.

September 2010:

2nd: Not sleeping, leg pain, feeling terrible, can hardly walk, more tests at the hospital.

4th: No longer limping but returned to ER because of fever.

5th: Stayed at the hospital with no answers, still with fever, blood transfusion.

6th: Still having fever and cannot come home.

8th: Had a CT Scan to look for fungal infection. Scan showed what was believed to be fungus on tip of his liver. (Needle for the CT was a total nightmare.)

9th: First liver biopsy- unable to reach the spot.

11th: Surgical liver biopsy

14th: Infectious disease doctor no longer concerned about his infection bc he's been fever free for a week.

15th: Had another CT scan... much easier this time. It showed fluid in the abdomen... this made the team decide to reverse his future chemo rounds.

16th: Spinal tap.

17th: Chemo and they are still looking at Hunter's liver bc of some spots that showed up in one of the scans.

20th: Hunter's appetite has decreased and he comes home from the hospital. Climbed the steps without stumbling (unlike the first time he returned home).

21st: Climbed in and out of his loft bed for the first time since diagnosis.

24th: Slight fever that returned to normal before bed time.

25th: Much improved appetite.

26th: Hunter Skypes with his church friends during Bible Class.

29th: Team decided to drop the liver issue. They are no longer concerned.

October 2010:

5th: Lost his hair over the past two days.

6th: Meeting with the transplant team. Faced with the decision about whether or not to give Ronin that drug that would increase her bone marrow cells during the harvest. (We decided to decline that option.)

7th: Back to Vandy for chemo round three. Had lumbar puncture and ultrasound which revealed no more fluid on his abdomen. This means they can proceed with original chemo plan.

8th: Intense chemo that requires eye drops

9th: Feeling very sick, up all night, pain meds, lots of nurse visits. I get to stay with Hunter for the first time since diagnosis. Officially his worst day at the hospital yet.

10th: Still very sick. Caffeine drip, Benedryl, sleeping most of the time. Diarrhea started. Jon took over at the hospital.

11th: Increased levels of Leucovorin has worked to push the Methotrexate out of his body at a faster rate.

12th: Hunter has a blood transfusion and comes back home!

13th: Eating well and having fun! Another $4,000 shot of Neupagen. Developed itchy rash probably caused by the shot.

14th: Rash gone.

16th: VERY low counts.

17th: Temperature that keeps creeping up. Did not make a trip to the ER.

18th: ZERO counts

22nd: Counts recovered. :) Enjoying being out of "No Counts" prison.

28th: Entertained friends at a small Halloween gathering.

29th: Big pre-transplant work up for both Ronin and Hunter.

November 2010:

2nd: Bone marrow biopsy and spinal tap

4th: Pre-transplant dental check up. Learned that there was leukemia in Hunter's spinal fluid.

5th: Spinal tap was normal. Plan is to move forward with 4 days of cranial radiation but transplant still on time.

9th: Starts cranial radiation and Ronin has her "interview" with child life. Hunter was VERY sick after radiation. Headache and vomiting.

10th: Jaw pain following radiation.

12th: Ronin has a cold and it causes a LOT of stress! Team reports that Hunter is in the absolute best condition possible leading up to transplant. Hunter got to get into the hot tub which was very important to him.

15th: Hunter moves into the hospital for transplant. Has surgery to remove his port and have his Hickman line installed.

16th: Starts TBI (Total Body Irradiation) and didn't require anesthesia.

20th: Took Michael to the hospital for the long haul.

21st: Last day of chemo.

23rd: Transplant day!

27th: Michael and Hunter had a hard night. Hunter was up sleep walking and feeling terrible.

December 2010:

2nd: Got to stand in the doorway and say Hi to Hunter. He's doing really well!
6th: Hunter is wild and the team expects to see counts in a few days.
7th: Throwing up with diarrhea.
9th: Taken off safety precautions so I guess they are no longer concerned about the possibly infection.
10th: Counts! Has missed the window for mouth sores.
12th: Increased counts and hanging in the nurses station.
13th: Counts are 320!
16th: Mom and Dad swap places for the first time since transplant.
18th: Starts trying to eat a little.
21st: Improved appetite.
24th: Entire family spends time together on the 6th floor.
25th: Christmas open house and party at the "hotel Vandy".
26th: Lessons on dressing changes and line flushes, oh my!
28th: Bone marrow biopsy and Hunter moves into the Hope Lodge.
29th: Bone marrow biopsy clear of leukemia.
31st: More tummy issues and learned that H is 99% engrafted with R's bone marrow.

January 2011:

1st: Mom moves in to the Hope Lodge with Hunter... more training with the TPN pump and meds.

4th: We head home!

6th: Our better late than never Christmas.

8th: Hunter is starting to eat a little more.

9th: Transitioning back into a routine and the Captain returns to work.

19th: We meet with Make a Wish for the first time.

21st: Hunter stops eating and drinking.

February 2011:

1st: Starting to discuss testing for GVHD

4th: Scope and biopsy which led to diagnosis of upper and lower GVHD diagnosis.

Started a HUGE dosage of steroids.

6th: Eating better and requiring melatonin to help him sleep.

Sleeping a lot during the day, rash: steroid related.

8th: Gained 1.5 lb and is no longer being hooked up to fluid pump.

9th: Steroids turn Hunter into a comedian.

11th: Starts to tolerate dairy again.

14th: Frequent urination creates concern of temporary diabetes.

16th: Started blood pressure medication.

18th: Starts tapering off steroids and receives a routine infusion.

Week of 27th: Looking extremely puffy from steroids

March 2011:

1st: 100 Day work up: lung test, ECHO, biopsy,chest xray (eye exam postponed)

3rd: Having trouble sleeping because of steroids.


6th: Gave steroids later and upped melatonin dose: slept all night.

7th: Flushed his Hickman line for the last time!

8th: Hickman line removed!

10th: Off night time dose of steroids.

11th: Hunter's 7th birthday AND we learn that his bone marrow is 100% his sister's!

15th: Sat in the clinic waiting room with no mask, dropped a med, and permission to take baths and use the hot tub.

16th: Whole family got in the hot tub! First time in public (bought himself a sticker mosaic set at the Parent Teacher store)

17th: Had frozen yogurt as a family.

22nd: Eye exam reveals no problems as of now and his clinic visits are reduced to every other week.

28th: Hunter starts to have more energy.

April 2011:

1st: Saw Diary of a Wimpy Kid in the theater.

5th: Started transitioning meds time so that he only takes meds 2 times a day instead of 4.

6th: Went with his dad and brother on a trip to Florida to visit family and attend a memorial service for his "Grandma Betty".

9th: Took his last dose of steroids. No more redness in his face and reduced puffiness.

12th: Experiencing headache most likely from coming off of the steroids.

14th: Decreased appetite again but otherwise having an excellent day.

16th: Went to Target and the library for Easter Basket shopping.

17th: Hunter starts to show great interest in gardening.

19th: Vomiting and not wanting to eat :(. Otherwise has been given the green light to return to church and join Cub Scouts. Cyclosporin can be moved to 8 and 8 as we start to taper.

20th: More vomiting :(

23rd: Hunter asked that he be taken to the park.

28th: Underwent tests that showed that he has adrenal fatigue. Starts hydrocortisone.

May 2011:

1st: Returned to church!

2nd: Appetite starting to return.

3rd: First Cub Scouts meeting.

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