June 2002 Updates
6/28/02 Update

We got released from the hospital yesterday.  While we were in the hospital, Ben completed his 4th Methotrexate treatment and 7th Vinblastine treatment.  This hospital trip went fairly smoothly with the normal discomfort of being in the hospital.  Thankfully, Ben's Methotrexate levels came down quickly enough after treatment that we could go home yesterday.  While we were in the hospital, Ben also got antibiotics for an ear infection, but that seems to be clearing up.  Ben's blood counts are a bit low, and his hemoglobin is low - he may have to get a blood transfusion on Monday.  He is going into the clinic for Vinblastine on Monday, July 1.  Ben is happy and playful as normal.  He is moving all over the floor by scooting backwards and rolling.  He is working on crawling.

Marie left on Tuesday morning with her Grandma and Papa Stokman for Indiana and Diamond Lake in Michigan.  She will be there with them for 2 weeks.  We miss her terribly, but it will be a fun trip for her.  She is enjoying the farm and playing with the doggies and kitties.  We are home with Ben trying to catch up on some much needed rest and doing some additional research.

Before Papa Stokman left, Marie made him carrot cake for his 55th Birthday.  Here are a few shots right after eating cake...

6/21/02 Update

We just got back from an appointment with Dr. Etzl at PCH.  Here is a summary of what we have learned from review of the MR & CT images:

Brain: The lesions in the brain at the same size as last time.  So the lesions are not growing and they are not shrinking.  The 'new' lesion in the cerebellum is still there.  We still do not have a hydrocephalus issue - that's good.
Lung: All of the lung nodules are still there.  There is another nodule in the right lung that is either new or it was not noticed before.
Kidney: This is a new area - we were surprised to hear that Ben has two lesions in his right kidney.  They are under 1 cm in size.  In hindsight, one of the lesions may have been there before.
GI: We now need to monitor Ben's large intestine.  The radiologist reported some thickening of  the caecum (wall of the large bowel) - we do not know if this is related or a reaction to something else like a minor infection.
Thymus: Normal - that's good - we had a report of an abnormal thymus in the past.
Skull Orbit Lesion:  The x-ray shows that Ben still has the skull lesion near his left eye.  A detailed comparison was not made as the brain lesions are currently more important.
Scalp & Skin: Over the last six weeks, Ben's scalp has fluctuated.  He seems to have more lesions in general - they are redder and most of them are getting raised yellow centers.
Other Organs: Pancreas, spleen, liver, & adrenal glands all look normal.
So what are the next steps?  The lesions in the brain were neither growing nor shrinking - does this indicate that the chemotherapy is working?  The answer: we are not sure.  It was decided to keep on the same chemotherapy for another 3 weeks (Methotrexate, Vinblastine & Prednisone).  This way, in case the drugs are working, we will be giving them a chance to continue to work.  But instead of going for 6 weeks, we are going to re-evaluate, through MR & CT scans, in 3 weeks.  The decision to stay on the same chemotherapy was made with input form Dr. Arceci & Dr. McClain.  After the three weeks of continued treatment, we may move on to Etoposide (VP-16) or 2-CdA.

Dr. Etzl was going to admit us to the hospital tonight, but Ben has a rash, has been having some light fevers, he has a little diarrhea, has lost about a pound and a half, and is neutropenic (low neutrophil counts - see Ben's blood counts).  Instead he decided to admit us on Monday morning for the Methotrexate and Vinblastine.  We will probably be there until Wednesday night or Thursday morning.

Here is Bill's wonderful Fathers' Day present, pictures of his cuties...

6/20/02 Update

Well, the scans are done.  We have looked at the MR results on the brain - the bad news is that the lesions have not gotten smaller.  They may have even grown.  We have not reviewed with the doctor yet or done a detailed analysis of whether they have grown or stayed the same.  Either way it looks like more serious chemo, probably 2-CdA (also called Cladribine).  We meet with Dr. Etzl tomorrow.  We sent Dr. Arceci the scans - he will get them tomorrow for review.

Some minor web page updates:
    Updated Histiocytosis page (more to come)
    References (books, web pages, articles & doctors)
    Updated FAQ page in red
    Dr. Notes updated with Dr. Arceci's meetings

Ben in his Harley outfit eating with Marie...

6/18/02 Update

Just a really quick update.  We returned from our Baltimore trip to see Dr. Arceci at Johns Hopkins today.  The trip was great, we learned a ton - we have not captured it all yet, that will be coming soon.  Dr. Arceci was very kind and spent many hours with us.  He was very thorough.

We arrived very late Saturday night.  On Sunday Ben ended up getting a fever of 102.  We ended up going to the ER at Johns Hopkins.  We were worried he would be neutropenic (low neutrophil white blood counts) and that can be dangerous.  We got his blood counts, but they actually showed really high band neutrophils - which means the body was generating a lot of new neutrophils.  So this got them worried about infection so we took urine and blood cultures.  So far they are negative.  His fever went away.  We have no idea what caused it.

A special thanks to Jenny Duncan & her husband Troy and daughter Alex for letting us stay at their house.  Jenny is actually a doctor at the pediatric intensive care unit at Johns Hopkins.  Thanks!!

Tomorrow is the big day to get Ben's CT and MR scans.  Stay tuned.

Ben really started saying "dada" on fathers day.  He was saying it before, but not as clearly and as often.  Quite a nice gift.

6/13/02 Update

Ben completed his last vinblastine treatment today in the clinic, so we are done with the six week initial protocol.  Blood counts were OK.  Next week we will do scans to see if he has responded to the treatment.  We are having a head MR, body CT scan and skeletal x-ray done on Wednesday, 6/19.  We are praying for good results.

We are on high alert for every new thing Ben gets.  Ben had a rash on his skin this week - we do not think is related to the chemotherapy or the disease.  We had a new laundry detergent and Ben swam in the pool for the first time, so it was most likely one of those things.  The rash has cleared up.  He did also have some white blister-like bumps under his tongue.  Carolyn gave him the Nystatin several times a day and they are gone today.   This "thrush" is a side effect of the chemotherapy.

Ben still has a cold with a stuffed nose and cough.  His lungs are clear per the doctor today, so it is just in his head.  His voice is a little hoarse, but that is also a side effect of the chemo.  The doctor said that it is not painful at all.  He has three new red marks on his face, they are different than his scalp lesions (redder and smaller) - we will continue to monitor those.

We took Ben swimming twice this week with his big sister, Marie.  The first time was in our pool in the backyard.  We also went to the Chandler city pool last night.  It is great fun with a large kids pool with a beach-like entrance and water fountains and a playground set inside the pool.  Marie went down the tunnel slide several times and Ben enjoyed playing in the deep pool.

Ben is doing very well.  He is still very alert and playful, just a normal 7 month old baby boy.  His diet is still almost exclusively breast milk - the doctors did not want us to change anything else.  We try giving him rice cereal once a day but he's not so sure about this eating thing.  He mostly doesn't like Carolyn to put anything in his mouth because it is usually icky medicine.  He has gotten VERY adept at getting the medicine dropper out of this mouth and pushing his tongue forward to eject the medicine.  Makes for messy clothes and sticky mom and baby.

Ben is still saying "mama" and now is starting to say "dada".  Marie is continuing to work on the potty and wearing big girl underwear!

6/9/02 Update

We are happy to report that we are out of the hospital one day before we expected to be.  Ben's chemotherapy went very well.  His scalp lesions did flare up about 12 hours after we started the Methotrexate, but they are back down to normal.  We can hope that the scalp lesion flare-up is due to the chemo attacking the lesions.  We have seen this all three times he has received the Methotrexate.

Ben's blood counts are solid.  He does have a little head cold, but it has not moved into his chest or caused fever.

We have started to taper Ben's Prednisone down.  He slowly gets lower doses until he is at zero in two weeks.  Carolyn is glad we only have to give it to him twice a day instead of three times!!

Bill's parents came last night to help out.  They are staying for about two weeks.  After that they will take Marie back to Indiana for a couple of weeks.  Bill's mother will return for the rest of the summer to help.

We would would like to thank everyone for the excellent dinners.  It is a real god-send to have such nice meals provided for us.  Sorry that we have not had the time to thank everybody personally, please know that the meals are very very much appreciated and needed.

The kids are celebrating grandma Swanson's birthday, Marie helped mama make the cupcakes for Grandma....

6/5/02 Update

Tomorrow we go into the hospital for about four days for Ben's third and final methotrexate treatment for this six week protocol.  In two more weeks we will run a battery of tests (MR images, CT images, blood tests and others) to determine if we have had any impact on the progress of the disease.  The impact of the treatment after six weeks is key.  We will be looking for the following:
  Have any new lesions appeared and/or have the existing lesions grown?- Bad
  Have the lesions stayed the same size? - Mediocre
  Have the lesions shrunk? - Good
  Have the lesions disappeared? - Great

Some good news - we are planning to go see Dr. Arceci, Director of Pediatric Oncology at Johns Hopkins in Baltimore on June 17th.  Dr. Arceci has been recommended by so many people.  He has treated some patients with JXG.  Dr. McClain has discussed Ben's case with Dr. Arceci when they were at a Histiocytosis conference in Greece.  In general, JXG is treated like LCH, but Dr. Arceci may recommend deviation from the standard protocol.

Ben has been sitting up quite often.  He now loves to play with balls and grab at daddy's glasses.  He has been saying mama when he wants her attention.  Here our cutie tries some rice cereal...

6/2/02 Update - By Carol, Carolyn's Mother

Ben tolerated his chemo on Friday very well--just seems to take it in stride. No real problems with nausea though he does not have his normal good appetite.  He seems to be a little horse after his vinblastine treatment.  His Blood counts are low, but up from when we were released from the hospital.  Carolyn has his med schedule and routine down to a science. He continues on the prednisone as part of his chemo protocol and the phenobarbital for his seizures several times per day.  He also takes several other meds to prevent some side effects (pneumonia, thrush).

Marie is so glad to have everyone home and keeps Ben supplied with toys, etc. Ben returns to Phoenix Children's hospital again on Thursday afternoon for the four day long treatment & stay.  We are hoping that Marie stays well enough to visit with Ben in the hospital as being separated from the family is difficult for her.  Bill stays at the hospital at night and tries to spend some quality time with her during the day.  Carolyn stays at the hospital during the day and does her best to get home to tuck Marie in and have breakfast with her in the morning. Carolyn's mom will be here for the weekend and Bill's parents arrive on Sunday to help out.  After the hospital stay, Ben is scheduled for one more outpatient chemo next week and weans off the prednisone.  He will then receive a full assessment to determine what if any effect this treatment has had.

Leaving no stone unturned on all that medical science has to offer, we are also working with the faith healing community.  Ben and Carolyn along with Carol and Linda attended a healing mass with a local Catholic healer.  We also have a Christian faith healer, Dwight who has visited three times and will also work with Ben in the hospital this weekend.  He says that he sees nothing active other than in the brain and that these are seeming to be smaller. Keep us in your prayers.

Bill is the latest family member to endure the rota virus. He is recovered now for the most part and we are doing our best to not expose Carolyn's dad, Chuck who is here for the weekend. Carol will return with Chuck to Nevada this evening and return to Phoenix on Thursday. We are fortunate to have friends here that are bringing us meals and company (organized by Beth & Dennis) and five meals prepared by a personal chef courtesy of Beth and some out of town friends. Chuck fixed steak, potatoes and corn last night at Carolyn's request. Food is a definite morale booster!

Marie put these band-aids on Ben...

 

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