Alta Bates Nitty Gritty

Day + 199 Dr. Peterson repeated the bronchscopy yesterday which is an intense and invasive procedure. John has continued to impress the doctors with his to tolerate this abuse and still come out the other side still being a polite and lovable guy.

Good news: John's migraine has finally gone away, the neck pain is less and his blood pressure is down. Today they are beginning to wean John off from the morphine drip at his request. Not such good news: John's hemoglobin continues to drop and it seems he is developing some hemolytic anemia. This is when the immune system starts destroying red cells for not reason. Today his hemoglobin is down to 7.6 so he will be given two units of blood. In order to help stop this they are raising his steroids for the weekend to see if it helps his body break the cycle. John's left lung is still not working very well, but since he is young and not a smoker his right lung with the help of oxygen will handle is breathing needs. This weekend he will be watched closely and hopefully by Monday the medicine from the breathing treatments will finally start working overtime and John will be able to cough up what ever is blocking his left lung. If not by Monday the pulminologist will do another bronchscopy and or admit him to ICU for a day and do a more invasive procedure, but we are not even going to go there with this as we do not, I repeat, do not want to leave the safety of 4 north east.

I have to say personally that the nurses on this unit are some of the most incredible hard working people I have ever met. The really work their buns off and are not given the kudos that the deserve. Each and every nurse here has patients just as sick John and yet treat every patient as if they were there only one. This admission we have had graveyard shift nurses we didn't know well and they are so wonderful with John. My friend Mary of my said often there is standing ovations for actors and actresses yet we forget to applaud those who do everyday things that help, so today I ask for all to give a little standing ovation to the nurses here on the unit a standing ovation.

Day + 198 John continues to be extremely short of breath as his left lung is having major issues. Dr. Petersen is going to do another bronchoscopy this morning and try to break through what ever is causing the obstruction. So far it shows that John has some sort of fungus infection and they have ordered a powerful antifungal until they can figure out exactly what fungus they are up against (this takes several days to grow the fugus) so they are covering all of them. The great thing about modern medicine is two years ago fungus infections would almost of sealed John's fate, but they have come up with new medicines to handle most of the opportunistic infections that challenge all compromised patients. Dr. Tracy has explained to John that John's left lung is as if he has been in a major car accident and collapsed, but his right lung is completely undamaged.

Finally the headaches are in control with morphine drip (very small continuous amount), but John is not having to push the extra bolis every 10 minutes. I talked to Dr. Wolf this morning on whether I should be worried, but since John gets over one thing and before going on to the next this has allowed the doctors to stay on top of all the problems. Not to say John is out of the woods, but it is another example of John's amazing resilience. As far as what people can do to help please keep sending strength to him. John really needs to continue to be strong.

John's blood tests continue to be standard leukemia treatment results. No white cells, low hemoglobin and platelets. They are continuing to give him red cells everyday. Our friend Marlene is sending out a call via e-mail for anyone to please go to your local blood bank and donate a pint of blood or platelets (this takes a time commitment of about 2 hours) to help replace what John is using. So many people, but especially cancer patients depend on the generosity of healthy people donating blood products. This sounds like a good plan so if you have minute and know someone who may be able to help it would be much appreciated.

Will post again tomorrow when we are given the bronchoscopy results. Thanks again for all the support.

Day + 197 John last night rested a lot more comfortably since the pressure is off of his lungs. He is still on once every four hour breathing treatments with albuterol and this super mucus busting medication that will help keep John's lungs loose so it will be easier to cough up the left over blood from the clot. They took another chest xray this morning, have yet to hear the results, but if it was bad Dr. Petersen would have been in to check by now, so no news is always good news. I am not sure how much I explained in last nights blog, was a bit overwhelmed even though I do not feel John is at all in a critical state. If I am repeating myself please excuse me but yesterday they decided that John had a "blood pneumonia" caused by the low platelet count. This is when the lungs begin to fill with fluid, but in John's case blood. When they increased the platelets to twice a day it caused a clot that obstructed John's left lingual (spelled wrong) lobe and was squeezing his heart and caused his diaphram to raise up since the fluid was filling from the bottom of the lung. In essence because I am not explaining it in writing as well as I could with drawings his left lung was about half the size it should of been therefore making it very hard breathe. Dr. Tracy also thinks that there is some germ that began this adventure, but had been covered by one of the three antibiotics he is given.

John has returned to a constant IV drip of morphine and he can also press a button to to give extra. John fought this because it makes him so dopey, but it is managing his pain and helping him rest.

As far as blood tests are concerned everything is about the same as yesterday, he will get another unit of red cells with his hemoglobin down to 9 today. Dr. Wolf from Hawaii instructed that they will give him an additional dose of a mild chemotherapy today and again next Wednesday to cover all bases and get him into remission. The NMDP has confirmed a different date for donor collection of May 4th which will buy John at bit more time to get rid of the cancer cells and recover. Bummer is it will guarantee him an extra week in the hospital with a target date of leaving here May 8th, 9th or 10th.

Try not to worry too much about John and his condition. This is very typical for someone who is at this stage of fighting leukemia. There is always rough patches that thanks to medical science and great doctors they will get him through this as always. I asked the night nurse what acuity John is set at at his is only a 3. Three is stable, but needing watching. When John is a 4 he is 1 of 2 patients a nurse shares and if his acuity is a 5 he gets one on one nursing care. So compared to John being a 4 or 5 he is doing great despite all the extra aggravation of his lungs, high blood pressure, and pain.

Day + 196 This has been on heck of a day and night. John has been in extreme pain, especially his left shoulder. The chest xray showed the infiltrate is increasing in size so a pulminologist was called in. The decision was to do a bronchiostomy to take samples of the lung infiltrate to determine if it is being caused by a bleed in his lungs since his platelets are so low or if it is bacteria that is getting out of control. This is a procedure where Dr. Petersen, the pulminoloigist, knocks John almost unconscious with drugs and puts a tube in his nose and into his lungs. Right now until the test results come in they are treating both. Worst thing is the pain may be the cause of John's out of control blood pressure sometimes as high as 210 over 130 (that is stroke causing pressure)....In the meantime John is trying to survive...and I am trying to take Father George's advice and recognize John's suffering is his fight for life.

John's labs were the standard neutropenic fair, no white count, low hemoglobin and low platelets. Dr. Tracy has at John's request decided give red cell transfusions when he falls below 10 and continues twice daily platelet transfusions until John stops coughing blood.

Best thing to happen today is that Dr. Wolf called John from Hawaii just now, to hear for himself despite having a hard night and day, John is still not a critical patient. Amazing.

Day + 195 John continues to have headaches and left shoulder pain. I know the headaches are from the Mylotarg as the increased steroids help to reduce the pain and when this weekend they tried to taper them off the pain returned with a vengeance. The shoulder pain could be from the way John is holding his body from when the triple lumen is placed, but it could also be "referral" pain from the lower lobe infiltrate. One very good note is that John continues to be fever free so the infiltrate is being handled by the combination of antibiotics he is getting. Because the lower lung is diminished in size, John is on albuterol breathing treatments every four hours which is helping the rattling in his lungs. His 02 saturation rates however remain in the high 90's which is good.

Now to a couple nagging problems besides the headaches. His heart rate is too low and his blood pressure is too high. Not sure what is causing this, could be because John is laying down most of the time so no need for a higher heart rate and the high blood pressure (140/100 on average) could be from the amount of pain he is in. Luckily John's cardiologist Dr. Tsang was on call and he is adjusting John's medicine and adding another for his blood pressure. This is all completely a temporary situation.

Today John's CBC shows he is neutropenic with less than .5 white cells. I am not sure if they are going to do a manual differential to look for odd cells and blasts, but yesterday there were no blasts present. This means despite all the pain John has to suffer through the Mylotarg is doing the job. I only have to hope and pray that he will not have to have the other 2/3 dose, since it seems to be really hard on him. John's platelets are 10 this morning so they infused a unit of platelets and will do so every 12 hours for a few days and John is coughing blood and bruising quite easily. I think for such a big guy they may have to raise the bar and give John platelets before they fall below 20, he just needs more! His hemoglobin is 9.8 and they do not transfuse before it falls to 9.4, again I think he needs them and so does he since he always feels better when his hemoglobin is higher.

Dr. Wolf is officially gone for the week and John already misses him. He does call in everyday for a report and is running the show from Hawaii where he is giving lectures and having a nice vacation. He has left John in the capable hands of Dr. Tracy.

Other than John lying very still with ice packs and occasionally feeling up to watching a movie things continue to be very quiet here. Want to pass a very special thank you to Auntie Aud who generously spent the weekend with John allowing me time to work and go home to keep the cats company for a while.

Day + 194 Sorry about the delay in the daily blog. I had to work yesterday and by the time I got to Alta Bates to visit John it was not possible for me to use John's computer. John continues to have headaches from I am sure at this point the Mylotarg crossing John's blood/brain barrier. He is still receiving high doses of steroids, solumedrol and decadron. I believe it is the decadron that is what is making John such a crabby guy. Like all things this will pass too, just have to turn off my hearing aid and ignore the grumpy comments. It does make it hard sometimes when I am trying to help, or figure out what John needs, but on the other hand sometimes what John needs it not to be fussed over and left alone so I sit back and be quiet trusting he will tell me what he needs and I do not have to anticipate what will comfort him. Because of the intense headaches, John is set up on a Morphine "PCA" machine which means John can press a button every ten minutes and it will deliver 1 mg. of morphine. At first he was also on a continuous drip with the option to press the button for more, but John has requested that he only press the button even if at times at the eight minute mark he is frustrated that there is no "beep" that tells him his mission is accomplished an more pain relief is on the way.

Two other things of note for yesterday is John has a left lower infiltrate. It is a nice way of saying he has a mild pneumonia. John not must make it a priority to sit up and expand his lungs. He did receive one breathing treatment, mostly for John's comfort as his 02 saturations were still okay. The other interesting thing is that on the manual differential yesterday, no peripheral blasts were found. This means that even with the side effects, the Mylotarg is doing it's job. Just have to hope that it works overtime and crushes all the blasts so John does not have to have a second dose and the donor infusion will go as scheduled April 30th.

I am not sure I will post again today as I am working for a bit at Alta Bates. That is the nice thing about having sisters who are generous enough to work with my schedule and help John with keeping him company. I know others have wanted to visit, but John really prefers to keep this as low key as possible and not make a big fuss. Before we know it John will be back on the chef's line at Lalimes doing his externship and finishing school.