Dad reports in

Colleen had her best night yet. She ate (very little, but more than the usual lick), she played (she's figured out the whole IV tree obstacle), she sang during her draws (blood draws), and she took her meds without protest. She took her meds from Lisa, Colleen's nurse last night, and neither Susan nor I were there. I think there may be a little manipulation in her medicine protests. Hmm, she'll take them from Nurse Lisa, but not from mom or dad. No cajoling from the nurses. Take it or else, well, take it.
I fell asleep before Colleen did so she will have to tell you what happened after 11:30. Yawn!
Mark (Dad)

Been busy. Missed some days, but here's the update

Colleen has had some bumps in the road. Colleen has recovered from the C-dif infection she contracted, but yesterday she had blood in her stool. We do not yet know how that stands. She only needed platetlets once yesterday, and this morning she doesn't need them. It is day to day. Still not eating, but she is drinking. Her morning numbers are White Blood Cells - 7.3; hemoglobin - 10.0; Platelets - 54. She will likely need blood tonight and platelets.
Susan

FRIDAY doing better

The C-dif culture from yesterday is negative at 24 hours. Her blood cultures were reported negative as well. Colleen was so sick Wednesday night they were using the words, ICU. Oxygen had to be started, and she had atolectosis (sp?)in her lungs on xray. Yet by Thursday afternoon the fevers were gone and she was up and playing, and even ate half a popsickle Thursday afternoon. Today she has been fine. Still getting platelet transfusions twice a day, but no fevers in over 24 hours now. She continues to run high blood pressure and is medicated for that. Today for the first time in more than a week she actually ate food. Only three goldfish crackers and a popsickle, but that is more than nothing. Prayers are the answer. Thank you everyone who was praying for Colleen. Please continue to pray for her and our family. Thank you.
Susan

Platelets & Wiggles

Colleen has been using up her platelets rapidly. She needs platelet transfusions every day, even twice a day. She has gotten C-dificile to complicate things. Some of her oral meds are now back in her IV because of the vomiting. The "runs" are the worst, and the PURELL was removed from her room because the C-dif is not killed by it. That would explain how she got it while here. The BMT progress is going well. Her attitude is fine, but she isn't eating. She does drink a bit, but the vomiting twice this morning has had the medical staff re-evaluating the cut back on her IV food. She was being "weaned" for a second time over the last couple of days, but until we get her over the C-dif infection, mom thinks she needs the nourishment. The WIGGLES poster continues to be her favorite, but as she takes it down day in and day out, they are getting rather "tattered". When the day comes that she is discharged, she will go home to an AUTOGRAPHED Wiggles Poster for her bedroom wall. They sent her one in July when Mark wrote to them on her behalf. Also, because of the slight delay in her admission, she was able to attend the Wiggles concert at the Palace the week before her admission. A memory for all time.

Uh-oh, one step back

Colleen has developed an infection in her gut called C-dificile. At least that explains all the "runs". Still not eating, drinking a little bit, but she has had two days of vomiting and some sporadic fevers.

Colleen got platelets again last night

Colleen got platelets again last night. They finished just before midnight.
Her blood work at 8:30 PM Friday showed a small slip in her White Blood Cells to 4.8; Her hemoglobin was good at 10.4; but platelets had dropped to 43 and she gets platelets below 50 (normal range is 250-450).
This morning her blood was drawn about 5:30 AM and her WBC is 4.7 (tiny drop), Hemo is 10.1 (only needs a transfusion below 10), and her platelets are 55 so she does not need platelets or blood this morning.

Colleen's numbers

Her blood from 9:30 AM:
WBC is 5.1
Hemo is 10.9
Platelets 31
She is getting platelets transfused in just a few minutes, so she received Tylenol five minutes ago. Usually she gets benedryl too, but the nurse didn't bring any. She may be getting it IV.
Susan

Day 14: Check out the numbers - things are VERY hopeful - PRAISE THE LORD

Colleen is chewing up platelets. At 9pm Thursday she had more blood drawn, platelets were 16. She got more platelets at 11pm Thursday night. I don't have her Friday morning numbers yet. Her POST PLATELETS blood count Thursday morning was 57, so she gets an immediate "bump", but then it is gone in 12 hours or less.

Her Thursday 9pm WBC was 4.9 (excellent, normal WBC is 6.0 to 15.0).

Her Hemoglobin was 11.7, so the blood she got on Wednesday was plenty, and she is retaining the hemoglobin, so that is excellent.

Her blood pressure is now being controled with medication, as she cannot maintain it on her own.

Colleen is getting PLATELETS again today. Her count is DANGEROUSLY low at 9. When she is below 50 she gets platelets. She has gotten them every day since last Friday, with the exception of last Sunday when she maintained a count of 88. The nurse said she can't go home when they are dropping THAT low, and probably with a count that low, the doctors will start ordering her blood count now TWICE a day. Platelets are coming for her soon. He white blood cell count (WBC) is up again, looks like DEFINITELY she is engrafting. WBC - 3.2, Hemoglobin 12.2. She is holding on to the blood, but not the platelets.
Susan

Colleen is up but feeling down

Colleen woke up around 7:30 this morning. Her mouth was bleding.
I asked the nurse for morphine for her. She will NOT even drink her chocolate milk. Her mouth is hurting so badly. May only be her lip, but she won't let me or the nurse have a look. She is content to hold BOTH chapsticks in her hand, but won't put any on her mouth.
Susan

The pain of success

Colleen had a 99 fever yesterday evening, but it resolved and the nurse said she was normal temp in the night, but jumped to 99.9 at 5 AM. She slept on the couch for the night. She wanted neither her bed nor the chair bed.

Since I usually sleep on the couch, I think that she wanted that place for the night, thinking I'd be there too. She protested a bit when I moved off the couch and to the chair bed, but she got comfortable and slept well, and only woke once in the night. I covered her with her quilt and she immediately went back to sleep. I think she was checking for mom.

She looks to be DEFINATELY engrafting. Her body is chewing up the platelets they give her. She is down to 21 today, which is THREE days in a row she needs a platelet transfusion. Her hemoglobin is also down to 9.3 and she will get blood today too (under 10 she needs blood).

She ate NOTHING yesterday, very few sips of chocolate milk too. Loss of apetite is common during engraftment, as are mouth sores and sores throughout the digestive track. The nurse this morning says she should probably not be discharged this weekend, given the development of fever yesterday and this morning along with the fact she has stopped eating. These could also be signs of Graft vs. Host disease.
Susan

Robbie and Colleen to make birthday cards for Gabe and Rap tonight

Robbie had dropped by this morning and left me a note. She will be here after 3 PM. She and Colleen are going to make birthday cards for Gabe and Raphael. Colleen gets her "nupogen" shot in the leg at 2:00, so I can comfort her before I go. Only drinking very little chocolate milk and ADAMANTLY refusing anything else to eat or drink. Tonight her IV food is being dropped by four hours.

Broviac out (or is it "in") for maintenance

I changed her broviac dressing a bit ago. She got her port needle changed too, but the nurse did that. Her port is flushing, but not drawing, they will give her the "roto rooter" stuff called urokinase. Urokinase is an enzyme that is produced by the kidney and found in urine, that activates plasminogen, and that is used therapeutically to dissolve blood clots.
They have to do all her blood draws from her port now, because her broviac (both tubes) are "contaminated" with one of her meds. Not really contaminated (not germ contaminated), but for blood draws that particular med sticks to the tube walls and they would get a false high reading, so her port is for those blood draws now.
Susan

This morning Colleen is in an excellent mood

This morning Colleen is in an excellent mood. She is smiling and playing with the Barbie Dolls, singing and talking and watching the Disney Channel. She actually got hungry and ate one entire piece of BACON, plus two small bites of french toast, and about 2 ounces of grape juice. That is a lot for her, considering she has really had no appetite. If she keeps eating one meal out of three, breakfast is the best meal for her to choose. Her blood pressure is fine today. Her weight is maintaining, she was 13.2 KG this morning, no significant jumps or deficits. She did give Mom a difficult time with her oral medicine, and spit out the first one (ursodiol), which had to be reordered. She took the second and third oral medicine under protest, but swallowed them as requested by her nurse. She can protest once in a while, which lets me know she is still "HERSELF"! She is being a kid, and that is more important than being 100 percent compliant. I wouldn't want it any other way.
Susan

Colleen got blood and platelets yesterday

Colleen got blood and platelets yesterday, but her platelets were still low this morning, so more platelets today. She also has bruising all over her legs, I'm told this is very common, especially when platelets are so low. When the tech came to draw her blood this morning, she forgot to clamp the tube, and blood flooded her broviac tubing past where the tech was drawing, not only wasting the blood she had already drawn, but then making the "waste" blood unable to be returned to Colleen. I asked for the NURSE. Because Colleen can only have so much blood drawn each day maximum, the nurse or tech uses a special double syringe that has a "stop" on it, draws the first blood which can't be used in the lab, then they draw the second tube for the lab, and switch the stop back to return the first "blood draw" back into Colleen. This way they minimize how many "teaspoons" of blood they take from her. So, today she got THREE draws off of her instead of only giving ONE, and got zero waste returned.
Today's numbers for anyone that knows what they mean: White Blood Cells - 0.3 (6.0 to 15.0 normal range); Hemoglobin - 12.5 (11.0 - 14.0 Normal, but 7.0 to 8.0 normal for her with sickle cell disease, so the transfusion of Friday has helped); Platelet Count - 38 (150-450 Normal, below 50 she gets platelets, yesterday's platelets apparently didn't help enough).
Her blood pressure has been running high all morning too. And our typical COOPERATIVE patient, has been anything BUT cooperative. She refused to take her oral medicine today, and after an hour past dose time it was necessary for Mom and nurse Heidi to INSIST. After the first med, she was more agreeable to the second and third doses. But she fought her temp and blood pressure this morning. She just isn't "herself" today. She's entitled, as she has been so very BRAVE and COMPLIANT throughout her three and one half years, she can have an "off" day. She got a tiny dose of Morphine at 11:30 AM, and blood pressure medicine has been ordered.
On the HAPPY side of the morning, Colleen ate almost her entire French Toast for breakfast! Plus some chocolate milk. YIPPEE! She doesn't want to cuddle, but did let me read some to her this morning while she sat in her bed. Her skin is dry, and putting lotion on her is a battle, she just does NOT want to be touched at all. She doesn't feel well, and that is to be expected, although she has smiled many times this morning. She is quite a flirt with the housekeeping staff that comes each morning and evening to empty the trash and sweep and mop the floors. She will smile for them and play "hide & seek" with them. She is a doll, that's for sure. She noticed also that she has "Baby Hair" on her head. Just some "peach fuzz" left, and it is beautiful.
Susan

Canoe Trip for the "guys" this weekend.

Canoe Trip for the "guys" this weekend. We are attempting to keep the family in a normal routine as much as possible while Colleen heals. Some disruption is going to happen, but the annual trip is a "go" as scheduled. Boys, go BOND with each other, and grow closer to the Lord and Nature. Have fun, and we will see you on SUNDAY! Colleen wants Dad and Brothers to have a GREAT TIME and bring back lots of pictures and news to share.

Colleen is getting blood today. It was running when I got here. The nurse is getting me her test numbers.
Yesterday they increased her dilantin dose, as she wasn't getting enough. This morning the nurse can not test her dilantin level because she is getting blood. She will have the dilantin level test this afternoon.
Colleen is having fun with the bubble "spill" proof bubble maker from Grandma Carol and the stickers from Aunt Edna, which I brought her this morning. Her mood is okay, a bit cranky, but "cheer-able".
She is taking sips of chocolate milk, frosting smidge off her doughnut, but nothing else.
Mom (Susan )

Medicine name correction

I got the medicine name wrong. It is Neupogen.
She will get that at about 3pm. It is the med to help her immune system recover. The one that I said, methotrexate, was the "blip" of chemo. It was the one that almost got withheld if they determined she had water weight. There were two different medicationss discussed at the same time, but I thought the discussion was the same med. that led to my misstatements.

Anyhow, the neupogen has to go in an injection (poke) in her thigh. She has the emla cream on now before shot. I have to put it on her leg tomorrow before 1 PM, left leg today, right leg tomorrow.

Real Weight Gain or Water Retention?

Colleen is doing well this morning. She is amiable and drinking chocolate milk.
She gained a few ounces, but they are concerned it could be "water retention", rather than acutal weight gain. This water retention is one possible side effect. It would not be a good weight gain if it is water, and that may change a med she is supposed to get today.
Other than that, we are waiting on Dr. Chao to decide if she thinks it is real weight of water weight.
Dr. Chao was just here. She will decide if Colleen gets the Methotrexate today that is supposed to help her gain back her immunity. The scale they used this morning was different, so they want to re-weigh Colleen. That is important. All other factors indicate she should get the drug. No sign of "water" weight in any of her, ie: ankles not swollen, etc. They will postpone the med if it is water weight.
Mom (Susan)

No major changes today

Colleen is doing well, today. Nothing major is planned. She will pretty much determine what they do for her. Medication, etc, will be determined in response to how she is. In other words, from this point on, what Colleen needs medically depends on how her body is behaving (fever/infection/discomfort,etc.) is how she will be treated medically.

Plenty of good cells, not so much hair

Today is day 5 after Colleen's Bone Marrow Transplant. We found out Monday that Colleen got "11.7" parts per million (I think that is what they said) of stem cells from William in her bone marrow transplant. She needed a minimum of "2.0", so she got an abundance from her HERO BROTHER. And additionally, the doctors got MORE and were able to freeze some. William is doing very well, and donating did not slow him down one bit. He did NOT need a transfusion. Colleen's hair started falling out in clumps yesterday, she is still beautiful. She is really doing very well, eating and drinking a little bit, but she is now on IV food "TPN". Tiny fever last night, but resolved.
Mom (Susan)

Not feeling so hot today

Collen had a bath today and she did NOT enjoy it. She had her port needle out and her broviac dressing changed. The doctor wanted to take a picture, but Colleen was NOT happy about having her picture taken, so no picture.
Raphael packed Collen's black velvet dress for Mom to take t the hospital today. She is very happy to be back in her black velvet dress.
Colleen starting is losing hair. Lots of it.
Mom was combing it today and it was coming out in clumps.

More than enough stem cells from William to Colleen

We found out Monday that Colleen got "11.7" parts per million (I think that is what they said) of stem cells from William in her bone marrow transplant. She needed a minimum of "2.0", so she got abundance from her HERO BROTHER. And additionally, the doctors got MORE and were able to freeze some, which means if anything doesn't go according to plan for Colleen, then she can have this again at a later date and big brothers won't have to endure the donation process again. There is also an increased risk to Colleen for FUTURE cancer from having gone through CHEMO THERAPY, so then the stem cells will be there in a freezer for her if that were to happen. OR if William matches someone else, then we could donate those cells to that individual as well. And of course, the frozen cells match WILLIAM and BRANDON, in addition to Colleen, so FREEZER CELLS are all in all a very good thing for everyone.

Please continue to pray for Colleen and our family. We fully expect her to receive PLATELETS today, as her level was 51 Monday, and below 50 she will get platelets. She was eating chicken nuggets for lunch on Monday from Wendy's and a plain hamburger for supper also from Wendy's. There are specific guidelines for obtaining food for her, and the Wendy's in the hospital knows exactly what it means when we order for a BMT patient. So, we have to happily stand around and wait a few minutes, because Colleen's order will be prepared fresh. She may NOT have frostys or fountain drinks or salads or the fruit salads, etc. But she can have the freshly made PLAIN hamburger (no lettuce/tomato/anything on it) and then the small packages of ketchup only. She can have fries too, but those went untouched, probably due to her sore mouth. She is still getting the IV foods, and if she is eating even a little bit, that will keep her digestive tract working well. Just a little bit of ANYTHING is great, doesn't have to be a lot. So mom and dad are very pleased that she is eating and drinking a little bit.
Mom (Susan)

Feeling a bit yucky

My baby is doing well, but has a sore in her mouth. Please continueto pray for her and our family as the Lord puts us on your hearts.
It was a struggle to get her teeth brushed last night. Dad will bring her a new fancy character toothbrush to help encourage the brushing. The sores, I am told, will probably go all the way down her throat, but mouth care will protect her teeth from decay. It maybe that the sores are already in her throat, and that would explain why she doesn't want to eat. She did eat some carrot cake last night, and that if good. Nothing by mouth is bad, a little by mouth is excellent even if it isn't much. She is getting the I.V. feedings, so that it doesn't matter if her appetite is decreased from a nutritional standpoint. She has not lost any weight and is otherwise holding her own. She had another fever last night, and they took xrays and blood and urine cultures and started her on antibiotics, but I have not been told that anything is "growing". The nurse said they expect this. She got more blood Sunday afternoon because her hemaglobin dropped to 9.6, normally that would be VERY HIGH for her, but with BMT they have to keep her above 10.0. So that makes a total of three transfusions since admission on 8/23. Dad will post more pictures, so check those out later today.
Mom (Susan)

Colleen at the controls, making a perfect landing

Lots of Toys here at Mott.
And nice people too.

The End of Our Big Day

Today Colleen got William's bone marrow.
William did GREAT.
They were able to collect more marrow than they needed for Colleen, and froze some. Also, he did NOT need a blood transfusion, as his hemoglobin only dropped to 9.5, low for his normal 12, but still excellent. He will take an iron suppliment for a short while, and has a bandage across his backside and some pain, but otherwise he is doing really great.
Colleen has kept the fever away since 11 this morning. Her oxygen and blood pressure and blood levels, etc are all excellent. Unfortunately, not more than two popsickles to eat today. A few sips of chocolate milk earlier this morning, but barely a few sips of water tonight. She just doesn't want to eat anymore, and may be developing sores down her throat, a very common side effect I am told. She had been complaining of soreness on her bottom a couple of days ago, but the nurse brought special ointment, and she no longer complains, plus her skin looks very good.
Her broviac dressing was changed today and Dad got to observe how to do that. We will have to learn because when she is discharged the dressings will need to be changed at home a minimum of every three days.
Mom (Susan)

Bone Marrow Flush

Colleen just finished receiving William's Bone Marrow about ten minutes ago, and the flush pushed the remaining cells into her broviac. She maintained her blood pressure, her fever disappeared about 11 this morning, and she is taking all her medications without any fuss. What a trooper. "Colleen, you are the best patient. You know that?" says her nurse. The next two weeks will be tough, but she is doing even better than expected. Her appetite is gone again, but she is eating and drinking a tiny bit. We will watch her and decide if she needs IV food over the weekend. Please continue to pray for her recovery. September 2, 2006 is the cure date in sight. Today is called day ZERO, and the first 100 days are expected to be the most critical. WILLIAM is doing very well. His hemoglobin dropped to 9.5, which is very good, actually, and he did NOT require any blood transfusion. He is napping now, something he hasn't done in about a year, but otherwise his energy level is barely affected. Pray for his healing, he has two NASTY pokes in his hind end and a large bandaid.
Mommy (AKA Susan)

The bone marrow is going into her now

Praise the Lord.
We were just told that William gave so much bone marrow that they were able to freeze some.
Wow.
The drip is connected and at one drop every four seconds it will take 2.5 to 3 hours to complete the implant.
Colleen is napping now.
Dr. Chow told us that we should expect rough going for the next couple of weeks as Williams marrow attempts to implant and take over.
Susan just went down to get Jillian at the front door. Mrs. Boykins made us lunch. Mom, Dad, William, and Jillian will have lunch while Colleen naps.
Everything is working like a Swiss clock.
Dad

William is in recovery

William's surgery is completed and declared successful and he is being allowed to recover in Colleen's room. His recovery will be approximately 6 -8 hours.
The four of us are now in Colleen's room (734-763-7429) .
William's bone marrow is now being prepared for implanting into Colleen. That should begin about noon.
We are watching the Wiggles on the Disney Channel.
Thanks for following along with us.
Dad (Mark)

William is in surgery

William is in surgery right now.
Mom, Dad, and Jillian are in Colleen's room waiting for the call to go to recovery.
Jillian is going to visit the Boykins, friends from our Mott Sickle Cell Support Group. Mrs. Boykin has three boys, so we fully expect that Jillian will enchant her.

Colleen has kept much more hair than I thought she would. Her chemotherapy ended this morning. Today is a day of rest.
William is at the hospital right now being tested as a final prep for tomorrow's harvesting surgery.
Tomorrow is day zero. William at Mott at 6:30. Surgery at 7:30. We (William, Mom, and Dad) will accompany the blood and bone marrow to Colleen's room and watch it drip into her. There will be no pumps. It will simply flow into her. As the blood circulates, the bone marrow will no where to go. (Hurray, God. Good design.)
The next two weeks are critical.
Dad (Mark)
http://photos1.blogger.com/img/263/7664/1024/20050826_241.jpg
HERE WE GO. Weeeeeeeeeeeee.

Just another day at Mott - the toys have all been played with. What's next?