Just thought I'd give everyone an update on Jacob's condition and treatments. Thanks to everyone for your continued support.
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Day +15
Posted Nov 5, 2009 11:17am
When we last provided an update on Sunday, we had seen 3 consecutive days of cell count improvement.
The trend continued on Monday as we saw the WBC, Platelet and ANC all increase and Hemoglobin stayed flat. The mouth sores started to heal and pain from them was much less. The sores on his bottom are still tender but healing slowly. Hair is falling out on pillow, shirt and in the bath. Jacob is irritated with finding small pieces on his mouth as he lays in bed. We suggested shaving it to make the strands smaller but he was against it. During his visit on Monday, Dr. Duerst said that his medication bags on his pump will start to be reduced and some of the med's will now be given orally. For the last week or so, Jacob has been on Neupogen which helps to stimulate the WBC and ANC after transplant. This medication will be taken away on Tuesday. Over the next couple of days, we will then see a drop in the WBC and ANC levels. The White Blood Cells will level off and then slowly grow again in number as the body takes over without the help of the Neupogen. Dr. Duerst suggested today that we try to leave the room (with a mask on) and take a walk down in the hallways of 4W(4 West is the area where Jacob is that is reserved for Oncology, Radiation and Stem Cell Transplant patients). Jacob wasn't in the mood on Monday to take a walk. He was having a difficult day with his emotions and being very difficult for Jen. He was sad, mad crying and yelling at times. This is partially due to the fact that his constant pain medication was also taken away today which is causing some withdrawal symptoms for his body.
Tuesday is the day that his PICC line dressing is changed and cleaned each week. It is quite painful and not a fun time for Jacob. The blood counts this morning were again very strong and doubled yet again for the WBC and ANC. This is the last day that the Neupogen will have an effect on the numbers which we expect to drop tomorrow. The physical therapist made a visit and Jacob did an excellent job during his session that lasted nearly 30 minutes. His mood was quite good all day. Jen bathed Jacob and for the first time he was actually comfortable in the bath and actually wanted to play for a while in the tub. Jen had been preparing Jacob all day for his first walk out of the room. He still was not very excited about it when I arrived on Tuesday evening. I thought for sure that he would be thrilled to get out of his room! We convinced him to put on his mask and off we went into the beautiful halls of 4 West. Jacob was very nervous and asked Jen to carry him for the first portion of the walk. We journeyed down about 6 rooms to the end of the hall and passed room 403 where Jacob first stayed before moving to the isolation room. That was a pretty symbolic event as we have come such a long way in these last 3 weeks. We took a full lap around the 4W area passing twice by another little patient, about 3 years old who was walking with her parents.
On Tuesday afternoon, Jacob started to frequent the bathroom and was experiencing a serious case of diahrhea. This would continue through Wednesday and is thought to be another symptom of withdrawal that his body is showing from being taken off the morphine. Wednesday counts dropped as expected. WBC went down from 14.5 to 6.5; Hgb went up to 12.0, Platelets went up from 170 to 237 and ANC went down to 5,078. The doctor said that he looks great. They will watch the diahrhea and for other symptoms of Graft Vs. Host Disease and test anything that looks suspicious. His stool will be checked to make sure no other infection or virus is present. Jacob and I had a good day...spent some time doing his homework and we even played a game of battleship. We took another walk around the hallways and he said that his knees were sore. I explained that from all the time laying in bed, his muscles aren't getting the exercise they normally would and he needs to continue to take these walks to build his strength back up. At bedtime, I was doing some work on my laptop and we were watching the World Series. Jacob asked if I would close my computer and lay in bed with him and watch a movie. We fell asleep together watching Kung Fu Panda and he slept solid all night.
Jacob is still not eating much. He will try things and take a few bites here and there, but not much of an appetite. The protein and fats that he is receiving via IV has been on a 24 hour drip. Yesterday, they reduced this down to 20 hours a day with the same volume of protein and fat and today this will be reduced to 16 hours a day. The doctor said that the blood sugar levels feel "satisfied" because of the IV which is partially the reason for Jacob not having an appetite. With the hours of the IV being reduced and gradually reducing the volume/doseage of protein and fat, his natural appetite should slowly start to build again.
His hair is very thin now with very little left on the sides and back of his head which has been falling out rapidly while laying in bed. Jacob has received much support from friends and family about everything including his hair loss. If you haven't seen the YouTube video that was made by some friends who showed their support for Jacob, you should check it out. It was a very nice gesture that really made Jacob smile. Grandpa "Shelby" Kowalik joined in on the fun shaving his head on Sunday. The picture that Jacob saw made him smile but others were quite frankly frightened by the sight!(jk Dad).
We often say thank you and people say it's not necessary, but I really am blown away by all the support that we are receiving. The gifts of love, prayers, food, fundraisers and all other simple acts of kindness are so gracious. We ask for continued prayers and positive thoughts as we navigate forward watching for the GVHD.
Love and thanks,
Mike, Jen and family
Day +16
Posted Nov 6, 2009 4:51pm
GREAT NEWS! We just found out that Jacob's body is 100% donor cells. The doctors were hoping for 80-85% donor engraftment but we are 100%. Jacob's diseased cells are now gone and he has healthy cells. Once again Jacob is amazing!
The goal now is to get Jacob off the liquid IV bags hanging on his pump. Jacob began taking his medication orally today. First time since he had the mouth/throat sores. He will be taking 5-6 medications daily for the next 6 months.
Today he finished his nutrition bag that he has been on for the past 3 weeks. Hopefully he will begin to have an appetite now and eat solid foods.
Also, today Jacob has officially joined his bald family and friends. He looks so cute!
This morning during the transplant teams rounds they once again said Jacob is doing great. I asked them about the purple dark racoon eyes. He said that is from the radation. The arm pits, eyes and groin area will darken more than other parts of the body. The skin color will lighten over time.
This morning the doctor said that Jacob will be ready to go to the Kohl's house probably next Tuesday. By Tuesday he will be finished with his 10 day antibiotic. I told him that is great that Jacob will be ready by Tuesday but next Friday would be fine too! Mommy isn't ready to be left alone. The doctor just laughed! I told the doctor to please feel free to send a nurse over with us.
Alot of milestones today. Even though we received great news about his body having 100% donor cells we still are at risk for the next 84 days.
Thank you again for the overwhelming love, support and prayers.
Love
Mike and Jen
Yes, its a lot of info but Mike (Daddy) really appreciates all the support they've received, as does everyone, abd wants to keep you up to date with as much info as possible. I think that writing about it all helps also. I think we can relate with that.
Thanks to all here,
Bobw
P.s check out the youtube video if you haven't yet.
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