Kelly's Get Well Site

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November 29, 2004 - The chemo has hit hard.  Kelly was very nauseous all during the night.  The nurses kept giving her medicine for nausea that basically made her sleep until 3:00 in the afternoon.  Since she has finished the first 4 days of the chemo regimen, the day nurse thought she might be going home.  Dr. Erba stopped in around 10:30 but said he would stop back in when she's awake.  I am confident he'll be stopping by before he leaves the hospital tonight.  The bone marrow transplant fellow (Dr. Desei) stopped by to discuss Kelly's history and examine her.  He said Dr. Chris Reynolds will be back in about an hour to further discuss the bone marrow transplant issue.  Kelly is finally eating something, thank goodness, the nausea has left for the time being.  

November 28, 2004 - 00:00 hours the night started with the fifth of six rounds of chemo cytoxine.  This was followed by platelets around 2:30 am.  The nurses spent time untangling all of the IV hosing (she has 4 lines in her arm).  I cannot keep up with all they do at night I would need a nurses log to tell it all.  Attending physicians came in around 10:00 a.m. to examine her.  After wrapping up the last round of cytoxine at 11:00 am Dr. Erba came in around 12:00 pm.  He said she responded nicely to treatment with a little issue with the Fibrenogin counts.  Scott and Jenny showed up around 2:00 p.m. with the wedding party and friends.  Jenny, being the little cutey she is, was wearing her wedding dress.  Ohhh how sweet!  Be sure to check out the pictures in the photo album.  Unfortunately, not too long after Jenny, Scott and others arrive, they came to take Kelly down for a chest x-ray to see how strong her heart is (if that's all she needed we would have this licked) so the Dr’s can move on to the next round of a different chemo.  Information overload stay tuned, continuous updates and changes.  Pam, Chandra and Jason stopped by to visit also.  Last night they gave her some platelets and about 30 minutes into the transfusion Kelly's temperature went up to 100.2.  They stopped that transfusion because they say if the temp goes up over 1.5 points, they stop the procedure.    

November 27, 2004 - Dr. Erba stopped in around 10:30 am.  He checked Kelly over and asked if we had any questions.  Dave brought up the recent news about umbilical cord blood being effective treatment for  adult leukemia patients.  Dr. Erba first responded by saying he is not an expert regarding bone marrow transplant but then explained the media's interpretation of the cord blood news versus the medical research results.  He urged us to bring these types of questions up with the bone marrow transplant team that we will be meeting with on Monday.  I recall reading one blurb that said the cord blood method was an alternative for patients unable to find a match for bone marrow.  More to come about this in the next weeks.

Next he discussed Kelly going to Jenny and Scott's wedding.  He said Kelly's body is already  responding to the chemo in that her white blood cell count has gone down, however, her clotting factors were getting low.  This is good news that the chemo is working and getting rid of leukemia cells.  Unfortunately, since her platelets and fibrocimid levels were down, it was too dangerous for her to leave to go to the wedding.  He stated that Kelly was going to need transfusions of plasma, platelets, magnesium and something for the fibrocimid factor of the blood and all of this was going to get started right away.  

It was a very emotional day.  Kelly very badly wanted to take part in the wedding at least for a short time.  She really wanted to be in the wedding pictures.  Dave joked to Kelly that if they leave space for her in some of the pictures, he would take a picture of her in her dress and put her in the picture with Photoshop software.  That got a laugh or two out of everyone.  It breaks my heart to see her having to lay in that hospital bed with four IV lines pumping all these medications into her body when she was suppose to be celebrating Jenny & Scott's marriage with her best friends.  She had been working with them for this moment for a number of months now.  Life just doesn't seem fair right now.  I hope we have a less emotional day tomorrow.  One day at a time.  

We enjoyed visits with Danette, Audrey (Grandma), Ruth and Austin who won twice against me and Kelly in the game Sequence.  We had fun.  We also did a few cards of Mad Gab, which is hilarious.  

November 26, 2004 - Kelly's treatment finally was started last night around 11 pm.  She gets cytoxine every 12 hours and a constant Mesna drip to protect her bladder.  She has been in a great mood thusfar and even took a walk around the hospital with her Dad last night.  She's determined to take a different approach battling the disease this time.  Thank you to Mom & Dad for the great Thanksgiving dinner that was delivered by Larry.  Also, thanks to Danette for the food she dropped off at the hospital.  It's so nice to have something other than Wendy's.  Shannon, Lauren and Steve stopped by to visit.

November 25, 2004 - Happy Thanksgiving!  Dr. Erba stopped by around 8:30.  Kelly will be on a regimen used by M. D. Anderson in Texas that is called HyperCVAD.  She'll be on Cytoxin twice/day (every 12 hours) for 3 days along with a drug (Mesna) that is suppose to help breakdown of uric acid and protect her bladder.  On the 4th day she will be given Vincristine along with Adromycin.  Not sure of the spelling on all these medications but tried to spell them phonetically.  Kelly had a PICC line in her left arm and we waited and waited and waited after it was placed.  Finally, around 9:40 p.m. the doctor on rounds stopped by to explain that the Mesna was given to Kelly improperly (too much going in the first 4 hours) and they were going to compensate the remainder to last the duration of the Cytoxin infusion.  Dr. Erba was consulted about this mistake and he gave them instructions of what to do.  He assured us that it was not a mistake we had to be concerned about.  Unfortunately, since Kelly has relapsed the next alternative is bone marrow transplant so we will be seeing the transplant team on Monday.  We have a long, tough road ahead but Kelly is strong and again is committed to beating this thing.  

November 24, 2004 - Dr. Erba's nurse called to confirm the relapse.  Of course, Kelly was ready to pack her bag and head to the hospital to take on the fight again.  She's heartbroken, as are we, that this had to happen at this time with Thanksgiving tomorrow and Jenny and Scott's wedding on Saturday.  She was so looking forward to being in the wedding and was still hopeful she would be able to go on Saturday.  Off we go to the hospital around 3:30.  Her bed wasn't ready so we had to waste about 2 hours of time when Kelly could have been getting things done at home.  She finally was in her room around 5:30 and that's when all the questions get asked.  She got an IV for hydration and that was about it.  

November 23, 2004 - Kelly had an appointment for a blood draw at 2:30 and Dr. Erba at 3:00.  He said that he and the pathologist examined the blood and the cells look unusual.  He wanted to do a bone marrow biopsy because he thinks the leukemia is back and a biopsy would confirm his suspicions.  He explained that Kelly's counts had gone from white blood cells being 2 up to 10, which is normal, however, not for Kelly because of her low blood count history.  Her platelets were lower and her neutriphil was higher.  He was so certain Kelly had relapsed that he was ready to admit her right then.  Kelly. Dave and I were in tears.  Kelly explained that her girlfriend is getting married on Saturday and she is one of the maids of honor.  Dr. Erba said he would work with her as far as trying to allow her to go to the wedding but we would have to see.  He wants to get her in remission as quickly as possible while the counts are now out of control and the sooner he gets going, the better.  He said he was willing to wait for the bone marrow results to confirm the relapse and let her know the results tomorrow and she could make her decison about being admitted.   

November 22, 2004 - Life has been going well for us the past several months.  Kelly has been feeling good and living a relatively normal life.  Kelly and Amy even signed up for a Team in Training half marathon to raise money for the leukemia society.  She started working out last week but was feeling a tad under the weather.  She had her once-a-month blood draw today.  In the evening she received a call from Dr. Erba's nurse saying that her blood counts are unusual this month and he wanted to see her on Wednesday.  This was shocking news and Kelly became very upset while still on the phone with the nurse.  She called Dr. Erba to tell him of Kelly's reaction and he said to tell her to come to the office on Tuesday afternoon (a day he is normally not in clinic).  It was a very upsetting, stressful evening.

September 21, 2003 - We were called by Dr. Jim's Dad the other day saying we better get our "act" in gear and update this site.  I am glad to hear that people continue their interest with Kelly's progress and continue to look at the website - thank you!  The reason we have neglected updating the site is because the prolonged maintenance is going along pretty well.  The medicines that Kelly takes now is no comparison to how hard she was hit during the first 10 months of her treatment.  She has had to deal with a headaches a couple of months.  Mid-month she has ended up in the emergency room because the headaches got out of control as far as pain control and she needed help.  They also wanted to make sure that it was not related to the leukemia returning so she had spinal taps both times.  She's now had a total of 13 spinal taps.  The last two were done by the emergency room doctors and I'm sure they haven't had as much experience as Irene.  With the last one, Kelly ended up getting a spinal headache.  She still has to deal with low blood counts as well.  Dr. Erba has her get her blood tested early on Monday mornings, she then gives herself a neupagin shot and waits to hear from his office as to whether she should take half doses of her chemo or full doses.  If her counts are high, she takes a full dose; if they are low, half dose.  Otherwise, Kelly has been doing fine.  Her hair has grown back and is darker (not curly though).  She's adorable with her short hair (her big blue eyes really stand out).