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robsroadtorecovery · 3 years

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Daily(ish) Updates

On Thursday March 28th, Rob went to the ER for stomach pains. He ended up being checked into a hospital in Corona and they did several tests including a bone marrow biopsy. They discovered that he had a low platelet count, high white blood cell count, and an enlarged spleen. He’s needed plasma transfusions to keep his platelet level up. On April 1st he was informed that he has Philadelphia chromosome positive (Ph+) B-cell acute lymphoblastic leukemia (ALL) and was transferred to UC Irvine Health.

April 3th

-Rob started chemotherapy. His medications for the first three days will be cyclophosphamide (chemotherapy) and mesna (chemoprotectant to reduce side effects).

-His parents visited him and said that the medication was administered through IV and can take 3 hours to finish the treatment.

April 4th

-Rob took dasatinib orally, which is another treament for ALL.

-His sons, Chris and Trey, visited him.

-Rob said he felt fine but the doctors said that the side effects of chemo are usually felt after 48 hours.

April 6th

-Rob had vincristine and doxorubicin through IV, which are used to treat a variety of cancers.

-He finished his first round of chemo and he said he felt weak but on the mend.

-He was able to take a walk around the floor.

-The doctors will now monitor his blood production and figure out the next steps in his treatment.

April 7th

-Even though his chemo ended yesterday, they gave him an extra chemo pill.

-He was feeling nauseous and didn’t eat or drink much.

-He was also tired because his bed moves constantly to prevent bed sores but that makes it hard for him to sleep.

-He maintained good blood pressure even when feeling sick, which usually doesn’t happen when he’s sick at home.

April 8th

-He had bad muscle spasms that moved from his back up to his chest. The doctors gave him an EKG and the results looked normal.

-He was able to take a walk today and was in less pain.

-He ate some food and received IV fluids due to dehydration.

-The doctor said he’ll go home in a few weeks and when he starts his next round of chemo it’ll be scheduled and they’ll have a bed ready for him at the hospital. Not sure if the future stay will be a month long like this current one. He is already on his second round of chemo. He will take dasatinib every day until remission since it’s seen as a maintenance drug.

April 11th

-Bob and Linda visited Rob and they said he was in good spirits. He’s still nauseous and vomiting.

-He received a blood transfusion rather than a plasma transfusion. A nurse said that at this stage it’s not unusual for him to get a blood transfusion every day. It is unsure whether or not the blood transfusion is needed due to his low platelet count or if his blood production is lowered due to the chemo. (I’ll ask Heather to ask the next time she visits.)

-Erica visited a couple days before and said he had a CT scan of his legs when she was visiting. They were looking for blood clots but luckily they didn’t see anything. Previously we thought he had a CT scan in his legs to check for blood clots but it was actually an ultrasound.

-He also had a CT scan while Bob and Linda were visiting. They scanned his lungs since he’s been congested but didn’t see anything. They didn’t seem too worried about blood clots but it was just a precaution.

April 12th

-Heather said he had a low fever and they had to wait for it to go away before he had his blood transfusion.

-He has a sore throat and lesions in his mouth and throat from the chemo. It has made it painful for him to swallow.

-He seemed more upbeat today.

April 13th

-He was pretty groggy today and was dozing off due to his fatigue.

-He gets blood transfusions because his hemoglobin levels are low. He has blood in his urine and stool so that’s probably why he needs blood transfusions. The doctors say this is from the chemo.

-He had another platelet transfusion today.

-He was given chemo today and yesterday. Heather isn’t sure what’s going on because when she spoke to the oncologist she was told that there would be a break in between rounds of chemo. She will try to speak to someone the next time she visits to get a clear answer.

-Rob was able to get out of bed and shower today and was in a pretty good mood.

April 14th

-He will have a new procedure done tomorrow to figure out what is causing his congestion. It’s called a flexible bronchoscopy with bronchoalveolar lavage. The bronchoscopy is a flexible tube that has a camera and lighting. The bronchoalveolar lavage is the process of flushing the lungs with saline and can be suctioned back through the tube. They may take biopsies which will be done with a little Pacman looking tool that can take chunks of the lung. If there is bleeding they will use argon plasma coagulation to cauterize any bleeds. He will be under twilight sleep during this process which means he’s anesthetized but still verbal.

-In preparation for this procedure, they gave him a platelet transfusion today and will give him another one in the morning.

-He is already on his second round of chemo. He will take dasatinib every day until remission since it’s seen as a maintenance drug. I was told there would be a break in between rounds of chemo but Rob confirmed that he’s on his second round.

-(Backstory: Rob has a habit of falling asleep on the couch and when he was woken up to move upstairs he would sit on the edge of the couch and rock back and forth while falling back asleep. It was hard for Heather to wake him up and he would occasionally fall forward.) So last night he started to do the same thing. He was getting ready to get out of bed and the bed has sensors that notified the staff that he was getting up. He had one foot on the floor and ended up leaning forward on the bed. The staff tried calling his name and nudging him awake but he didn’t respond. They ended up laying him on his back and shined lights in his face. He woke up at that point and was responsive but he said he barely remembered what happened. They gave him a brain CT without contrast because they were worried he had a stroke due to his confused state and how hard it was for them to wake him up. It came out negative.

-He can’t use his CPAP machine when sleeping because it hurts his lungs when his diaphragm expands.

-He’s noticed that it’s been easier to breathe as the chemo progresses because the cancer cells are leaving his body.

-He said he also gets blood transfusions because he’s bleeding internally and when he has bloody urine or stool it’s because the cancer cells are leaving his body.

-He said he has been feeling “dumpy” the past few days but he feels a lot better today.

-He has been on constant fluids since checking into the hospital but today they skipped it because he is now too hydrated to the point of having puffy skin.

-They’re keeping track of his electrolyte levels because it’s important that they stay in a good range.

-Previously we thought he had a CT scan in his legs to check for blood clots but it was actually an ultrasound.

-He has had a CT scan with contrast in his abdomen as well as twice for his chest once with contrast and once without. He has had a CT scan for his lungs. They’re searching for blood clots, lesions, or more cancer.

-The doctors are already talking about bone marrow transplant. Ideally, they would do it while he’s in remission. His parents, siblings, and children can get tested to see if they’re a match to donate bone marrow. His children are the best candidates because they’re younger and can bounce back quickly from the procedure. It seems like the testing would be a simple blood draw.

-He said that he hospital has decent food.

April 16th

-The bronchoscopy was yesterday and he was awake for the procedure. They took samples of the stuff found in his lung and tested it. Most likely, they are culturing it to figure out what it is. Then they flushed his lungs with liquid and sucked it back out of the tube.

-He has a coccidioidomycosis infection, also known as Valley Fever. It doesn’t look like it has spread. He will have to take antifungal medication twice a day. He thinks he may have had this infection for a long time, even before being admitted into the hospital. He has had slightly elevated levels of white blood cells when he would get blood work done and he thinks it could be due to this infection. And when the chemo was introduced, it gave the fungus the opportunity to thrive. The antifungal medication can mess with his blood sugar so it needs to be monitored.

-He has two doctors on his team. One is a specialist who works with patients undergoing chemo with cancer in their lymphatic system and how they fight infections. The other is an infection disease doctor.

-For the past 4-5 days he’s been having an injection that is supposed to help him produce red blood cells.

-He had a platelet transfusion yesterday. He now bruises easily.

-He also had a PICC line inserted when he was transferred to this hospital. It’s a catheter that is placed in a vein in his arm and it goes all the way into the large veins near his heart. It makes it easier for him to get his medications or to get his blood drawn.

-He has been stumbling with his words, which may be a side effect and he’s still nauseous. He has lost 15 pounds so far.

-His hair started to fall out today.

-He’s had 5 CT scans with contrast so far. The hospital he was originally at did too many of them in a row and it affected his kidneys. The doctors at his current hospital were worried about kidney failure so they have been watching his kidneys closely.

-He had a lot of good sleep and was able to use his CPAP machine last night. He had a lot of energy today. He was able to walk around the hospital floor as well.

April 21st

-Rob is now home!

-He had really good numbers (platelet, red blood cell, electrolyte count) and was given the okay to leave the hospital.

-He has thrush, which is causing lesions in his mouth and esophagus.

-He’s on oxygen and has to carry around an O2 tank.

-His next meeting with his doctor will be on the 26th.

April 26th

-Not too much has been happening since he’s been home.

-He’s been sleeping a lot.

-His appointment with his doctor today went well and they talked about next steps. He’ll need to get another bone marrow biopsy to see if he’ll need to check back into the hospital and start other chemotherapy treatments. It’s possible he could be in remission.

May 3rd

-He will be checking in tomorrow for another hospital stay. It is unclear how long he will stay there.

-He had the bone marrow biopsy done but he doesn’t know the results so we don’t know if he’s in remission. He needs to be in remission in order to get a bone marrow transplant. Otherwise, he will continue with chemotherapy until he’s in remission.

-His levels are borderline okay so he was still getting transfusions while he was at home.

-He has lost 50 pounds so far.

-Hopefully he can talk to his doctors today to get more information about what the next steps will be.

May 5th

-He has checked back into the hospital. He’s expected to only stay for a week this time. He’s on his “second round” of chemo. He’s been on one chemo pill throughout this entire process but now he’s on the second round of other types of chemo.

-Preliminary results show that he may be in remission. Further tests will be done to confirm the remission.

May 17th

-Updates are now being reported by Heather rather than Rob. He hasn’t been well enough to talk on the phone.

-He was discharged last Wednesday. He was supposed to be discharged on Tuesday but he still had high levels of his new chemo drug, methotrexate, in his system so they kept him for another day.

-He had diarrhea for several days after being discharged and on Friday, it was so bad that they went to the ER. But the wait there was between 4-12 hours and he eventually felt better so they just went home.

-He had labs done on Saturday as well as a platelet infusion. He also had a vitamin shot to help him produce more blood cells, I think it’s B12?

-He had a really bad sore throat on Sunday and it was so bad that he couldn’t take his evening pills.

-He’s nauseous today, which makes it hard for him to drink and eat.

-He has another lab appointment tomorrow and depending on the results he may also get another platelet infusion.

-He has lost 60 pounds so far.

-He has a doctor’s appointment on Thursday and hopefully he’ll have the results back from his bone marrow biopsy to confirm that he’s in remission.

May 20th

-The doctor said that he’s essentially in remission even if the test results haven’t come in yet to confirm he’s in remission on a molecular level.

-He will still have to finish his rounds of chemo even though he’s already in remission. He will have 6 more rounds done. If he doesn’t complete all 8 rounds of chemo then there’s a possibility for him to relapse. The bone marrow transplant isn’t enough to keep him in remission, it needs to be all 8 rounds of chemo plus the transplant.

-Since he’s in remission, they will start the bone marrow transplant process. They will need to talk to his insurance to see which hospital the transplant can be done in because sometimes UCI Medical Center can’t do it with certain insurances.

-The transplant can be done starting now until the end of his last round of chemo.

May 31st

-He will most likely check into the hospital next week for this third round of chemo. His hospital stay should only last a week.

-He’s still tired and nauseous but getting better. He has his color in his face back and isn’t relying on the oxygen tank as often.

June 3rd

-On June 1st, he had labs done and almost fainted while at the office. They gave him an infusion of fluids and labs came back showing his creatine levels have almost doubled since Saturday (May 29th). The high levels made them concerned about his kidneys and they told him to go to the ER. The ER told him he had a urinary tract infection.

-He was given IV antibiotics and was discharged the next day.

-He was supposed to start his third round of chemo today but since he's still on antibiotics they will postpone the treatment.

June 30th

-Rob went in for his 3rd round on June 18th and he check out about a week later.

-He had a 7 week gap between his 2nd and 3rd round of chemo and apparently that isn't good. It's supposed to be a 3 week gap in between and any longer than that could mean the chemotherapy won't be as effective. But he was pretty sick during those 7 weeks and they wanted him to feel better before he started chemo. So we believe the doctor's weren't assertive enough when telling him about this 3 week period even though he saw his doctors weekly.

-He is now at home but isn't feeling great after the 3rd round of chemo.

-His insurance won't cover the bone marrow transplant at the hospital he goes to so he will have to find another hospital that will qualify.

July 1st

-He is now on his fourth round of chemo. This one is an out patient procedure. He goes in to get his dose of chemo and then heads home afterwards rather than checking into a hospital for a week.

-He started feeling a lot better after several days of not feeling well at all. He got his appetite and his energy back but not sure how long it will last since he started his fourth round.

July 20th

-He started his fourth round of chemo yesterday. They originally thought the outpatient chemo was the fourth round but it was just remnants of the third round. He will finish it up in four days.

-City of Hope was chosen to be the transplant hospital and his sisters are being tests to see if they're match. If not, they'll look for a match on the registry and if that isn't successful then his sons will be tested. They are half matches so they're not ideal.

-He is officially in molecular remission based off of a test they did with his bone marrow biopsy.

-At the moment he isn't a good candidate because he is too weak. He will have to get his strength up in the next couple of months in order to get the bone marrow transplant.

August 4th

-He had trouble breathing so he was taken to a hospital in Anaheim via ambulance.

-He had a CT scan and was given antibiotics.

-They diagnosed him with pneumonia and transferred him to Foothill Regional Hospital in Tustin.

August 6th

-He was transferred to the ICU this morning.

-He didn't eat last night and didn't want to eat this morning either.

-He was disoriented and that worried the doctor so they gave him another CT scan.

-Heather is trying to get him transferred to the UCI Medical Center since that's where he's been getting his chemo and it's a bigger hospital.

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