So our first visit to Karmanos in Detroit. We were given Valet so getting in wasn’t too bad and traffic down from Davison was quick. Front staff that checked us in was very professional and then a guide brought us to the room on the second floor where we had a pretty brief wait before being called back.
Dr. Yang is another great doctor that is very knowledgeable. Leukemia is his specialty and he is very informed on Kate’s condition. He mentioned it’s typically found in kids (under the age of 12) with around an 80% success rate of fully cured within three years. If she was 70 years old she would have a 10% chance of survival with treatment. Dr. Yang said she might be somewhere in the middle being 34 years old but he wants to treat Kate as a child which means it’s more aggressive chemo treatment.
So estimated treatment is 1-3 months of very aggressive chemo treatment. First 4 weeks is induction and then 6-7 months aggressive chemo then possible maintenance.
she will have 20 spinal taps over the course of three years to make sure the leukemia hasn’t entered her spinal cord since it wants to get to her brain which would be not a good thing.
unfortunately she will have to have multiple bone marrow biopsies to monitor the progress chemo is having on the cancer located in the bone marrow.
during this process she will have routine blood transfusions to get her blood numbers up since chemo will bring them down. Eventually after chemo kills the cancer cells, her bone marrow will hopefully start producing good cells.
how the doctor explained it is the good cells are getting pushed out or over run by all the leukemia cells. So chemo will hopefully kill this leukemia cells.
Monday Kate’s hemoglobin was 8.8 and then Thursday (yesterday) it was 8.7 and when measured today it was down to 8.3
Apparently when your hemoglobin drops to low you run the risk of bleeding and not able to stop the bleeding. They told us if Kate begins to bleed and we can’t get it to stop within an hour that I should drive her to the ER at Harper Hutzel which is attached to Karmanos and they will admit her then. Scary stuff.
Ran into a little worry. Tonight (9:25pm) kate began to have a nose bleed (her first ever). It luckily stopped within the first 10minutes because if it didn’t stop in an hour we would of been heading back down to Karmanos via the Harper-Hutzel Emergency Room.
Abby Angel Gift
Came home from a tough appointment today to find a care package waiting for Kate.
one of the sweetest women at Mclaren health plan is always looking out for how she can encourage and help others. One of those ways is through her “Abby Angel’s”. She lost someone and decided years ago to light the path for others struggling by giving these angels when they are needed. It is an honor to be gifted one by Lana because it means that she is now a warrior for your battle.
We came home today to a package of an Abby Angel from Lana’s personal collection to watch over and protect while we fight this battle. Words cannot express the thoughtfulness and encouragement that this angel and sweet Lana has instantly brought to our home.
Thank you all for being part of our warrior tribe. With this much determination, there is no way we won’t succeed in our battle.
Bone Marrow Biopsy
A bone marrow biopsy involves removing a small sample of the bone marrow inside your bones for testing. Bone marrow is a soft tissue in the center of most large bones. It makes most of the body’s blood cells. The biopsy is done using a small needle inserted into the bone.
Home Care Nurse Visit
Last night Kate called the Support line for the Homecare nurse complaining on how much the bandage hurts after they redid it during our Hospital visit yesterday (Friday). Kate was complaining of a burning sensation and very uncomfortable. A homecare nurse showed up and was very polite and helped explain how to clean the pic line with basically salt water and yea, I got my intro on how to do this myself for Kate. She re-bandaged it up and Kate kept thanking the nurse because it was like night and day difference. She is no longer after the polite home care nurse re-bandaged Kates pic-line.
Now if I could only get Kate to relax… I’m trying to restrict her some so she doesn’t get her blood flowing. In my mind, more blood flow means the quicker the cancer can spread since it is a cancer of the blood. Of course thats my logic and I really don’t want to loose my wife.
What is a PICC Line? Below is a pretty good illustration but its basically a quick way for doctors to pull blood from within having to re-stab kate with a needle every-time. It’s also a place for the doctor to administer the chemo treatments. She has to keep moving that right arm so it doesn’t get buildup on the line as well as get clogs.. we don’t want to get clogs in the line which is why I get the pleasure of flushing the line out daily.
I am glad she is more comfortable now. Kareta had hers in her chest & that seemed constantly uncomfortable. So glad she doesn’t have it in her chest.
So much love & many prayers being sent!
Fevers are no good
Tonight Kate developed a fever (running 100.5) and whats scary is they say if you have Leukemia and get a fever you must go to the nearest Emergency Room since its more than likely an infection which can prove to be fatal. So right now we are calling 1-800-Karmanos to find out what they want us to do.
Patients with acute lymphoblastic leukemia (ALL) present with either symptoms relating to direct infiltration of the marrow or other organs by leukemic cells, or symptoms relating to the decreased production of normal marrow elements.
Fever is one of the most common symptoms of ALL, and patients with ALL often have fever without any other evidence of infection. However, in these patients, one must assume that all fevers are from infections until proved otherwise, because a failure to treat infections promptly and aggressively can be fatal. Infections are still the most common cause of death in patients undergoing treatment for ALL.
The doc called Kate and said she needs to immediately get down the the hospital because it means it could be infection.
Just saw Dr.Woolman. Man he was a talker. Not giving Kate a chance to answer any questions.
They asked these questions:
- when admitted to Mclaren (flint): Tuesday the 4th.
- When bone marrow biopsy: 2/6/20
- when was picc line installed: 2/6/20
- last transfusion: 2/7/20
- did they give you any medicine: dexatron (2/7/20-2/10/20) 40mg a day for the 4 days.
- When did you learn for sure Kate has ALL: bone marrow biopsy confirmed Kate has ALL on 2/10/20
- allergic to anything: no
- taking any medicine: allopurinol (300mg) because music acid high, norco 7.5mg for discomfort for bone marrow biopsy but hasn’t taken any
- anything doctor should know?
- we noticed bleeding from picc Line.
- mentioned she had a bloody nose
11:00pm they brought her down for x-ray
Gave Kate tordol at this time for her headaches.
when we came in they gave her via an IV (not using PICC line) cefepime 2gm which is an antibiotic.
we are watching 2.5 men (the era that Charlie sheen still existed)
just had a visit from the Karmanos doctor on duty which did a quick evaluation of Kate. Going to transfer Kate up to a room in Karmanos, just waiting.
So Karmanos doctor on duty came in and did some more checking while we wait for a room. She mentioned Kate’s hemoglobin is down to 7.2 and her white blood cell count is at 1.7, so now we wait for her room
Got our room (9203) in Karmanos on the 9th floor but was told they may move her to 8th floor.. but not sure when. I’m thinking Kate would really just like to sleep. FYI: room is HUGE.
Lumbar Puncture – Spinal Tap
During the time you are fighting cancer (especially A.L.L.) you will have to received several Lumbar Punctures or also referred to as Spinal Taps. So what are they?
Lumbar puncture, also known as a spinal tap, is a medical procedure in which a needle is inserted into the spinal canal, most commonly to collect cerebrospinal fluid for diagnostic testing. The main reason for a lumbar puncture is to help diagnose diseases of the central nervous system, including the brain and spine.
A lumbar puncture (spinal tap) is performed in your lower back, in the lumbar region. During a lumbar puncture, a needle is inserted between two lumbar bones (vertebrae) to remove a sample of cerebrospinal fluid. This is the fluid that surrounds your brain and spinal cord to protect them from injury.
A lumbar puncture can help diagnose serious infections. Sometimes doctors use lumbar punctures to inject anesthetic medications or chemotherapy drugs into the cerebrospinal fluid.
It’s 3am on 2/17/2020 and we are in a room on the 9th floor in Karmanos Cancer Facility in Detroit.
This is the beginning of the Induction process which in short means the beginning of chemo treatments while keeping a close eye on Kate during the process. The doctor believes this will take less than a week this visit but the Induction process is typically a week.
There are four phases to chemotherapy treatment:
- The first phase is called Remission Induction. Treatment during this phase is designed to kill the leukemic cells in the blood and the bone marrow, putting the disease into remission.
- The second phase is Central Nervous System Directed Therapy. This phase kills cancer cells in the central nervous system and prevents the disease from spreading to the spinal fluid.
- The Consolidation/Intensification phase is given after the disease is considered to be in remission. It’s designed to kill remaining leukemic cells that may be inactive but could begin growing again and cause the leukemia to recur. This phase usually lasts several months.
- The maintenance phase is the final phase of treatment that lasts for two to three years. It’s used to kill any remaining cells that could cause a recurrence. Medications are often given at lower doses.
So her hemoglobin dropped to 6.1 overnight (in less than 12 hours) so they are getting everything together for another blood transfusion (#6). Today she’ll also get spinal tap which will inject some Chemo into her spinal cord while they take a sample to test to see if the Leukemia has made its way into the spinal cord.. we are hoping it hasn’t.
Dr.Yang is a superstar of a Doctor but seriously all of the doctors that we have encountered have been awesome. Our least favorite area was the Harper Hutzel ER room (happy to be out of there).
They may take another bone marrow biopsy if Dr.Yang doesn’t get back the results from the company they sent the bone marrow biopsy they took in Flint McLaren Hospital. Dr.Yang doesn’t want to delay treatment anymore so another bone marrow biopsy is a possibility and he can get the results next day to find out if she is Philadelphia chromosome positive or negative which dictates what ingredients need to be in the chemo treatment.
Starting Blood Transfusion now… need to get Kate’s blood count up. Only numbers they are really focusing on is hemoglobin (They want above 7 and its 6) and platelets (they want in the 50’s and it’s in 30’s).
Finished transfusion just now and they are now moving into doing a bone marrow biopsy on left side since it was done on the right side.
also adding some platelets
Good news is they didn’t do a bone marrow biopsy but instead they did something where they just extracted some marrow which I think they called aspired. So Kate earns her hashtag again #k8strong
they mentioned MRD testing, need to look that up.
next they are adding platelets and will do the spinal tap adding chemo in the spinal fluid at the same time taking some fluid for testing
Kate just left to IVR (radiation) for spinal punch. The procedure is roughly 20-40minutes and then there is recovery. They do sedate Kate which she is looking forward to so maybe she could get some sleep.
dr.yang got some news from the bone marrow biopsy and they said Kate is Philadelphia chromosome negative but he wants to double-check since treatment is very important to know for sure. So the test he did earlier will give him those results in 24 hours. He did say they are trying to get us a room on the 8th floor which is reserved for chemo patients. They do not want to start chemo until Kate gets on the 8th floor since the nurses here on the 9th floor don’t work with chemo.
now we wait for procedure.
Just spoke to Dr.Yang as he made a visit on his way out for the day.
he recommends Kate lay as flat as she can when she gets back to the room for 2 hours preferable but 1 hour minimum.
he said there is no reason why they can not start chemotherapy tomorrow which will consist of two drugs for chemo and she will have to take one pill (steroid) orally. The steroid she will take daily and the two chemo injections she will do once a week. More than likely she will need another transfusion but the current tentative goal is go home Friday and come back Monday. Repeat process for a total of four weeks which would conclude the Induction process at which time they want to get more blood marrow to see if the cancer cells are declining.
Kate got some food in her and now she’s fighting through some pain (with the assist of some pain killers) and maybe one more dose of pain killers before she tries to get some sleep.
im hoping to sleep on a cot or anything besides these chairs which are not comfortable.
i really need to thank our friends And family for helping take care of our dogs while we are gone. It’s a huge stress for Kate and I being so far away but everyone seems to be helping relieve the stress and I seriously can’t thank u enough.
it appear the remaining of our night will be hopefully uneventful so don’t be surprised if you don’t see anymore posts tonight (unless something negative happens).
we just got moved down to the chemotherapy floor (8) so now we are in room 8223
her hemoglobin is down to 7 so they are going to give her a blood transfusion.
Kate got some sleep and woke up on her own at 4am because she had to pee. The nurses then did bloodwork to see if her hemoglobin is back up from 7.4 now that she had a unit of blood last night. white blood cells 1.3 (normal is 4-11) and platelets 35 (normal is 55+).
Kate’s fed, she took a tylenol 3 for pain (pill), allopurinol (pill), antiviral (pill), anti-bacterial (pill) and an anti fungal (oral liquid) medicine. Now we wait for Dr. Yang to give us the game plan for today.
Internal Medicine (3 doctors) just came in and checked to see how Kate is doing and feeling. Sounds like Chemotherapy is still on the docket for today but we are awaiting Dr.Yang. They checked on how Kate is doing with all the procedures she had done yesterday. She is super sleepy and is passed out now but I think its a good thing. I see its lunch time and I may sneak downstairs and get something to munch on. I love chips but because of all the stroke victims in the hospital I lean away from them since its one of the major causes of a stroke. Actually I have been trying to eat healthy so I can keep taking care of Kate but I may break down and get something non-healthy (meaning something with some flavor) today for lunch like a burger from Wendys.
Dr.yang came in at the this time and gave us more information. Results of lumbar punture (spinal tap) proved positive results (no cancer in spinal fluid). He also spoke about treatment which includes:
the following once a week (every Monday as out patient):
daunorubicin (side effect: nausea, hair loss) – Syringe
vincristine (side effect: tingling in hands) – IV bag
*constipation is a worry with treatments so much the nurse and doctors ask every time they come in
the following every day for 28 days:
may add another drug week 2 and another drug that is used on children week 3 (rituxan) which focuses on A.L.L.
he mentioned things to pay attention to while she’s home which is mainly infection (fever of 100.4 that lasts more than 30minutes she must come to ER).
mentioned chemo will reduce platelets which are optimum at 50k but at 30k now and we may notice bleeding when below 10k.
after Induction period (first 4 weeks) the chemotherapy gets kicked up a notch and is unpleasant and this will happen for 6 months and sounds like multiple visits per week.
Kates first chemotherapy treatment is coming soon (sometime this afternoon)
They gave Zofran (for nausea) and Prednisone (the steroid) today at 14:30
at this time (15:12) kate received the daunorubicin via syringe. Nurse mentioned it is important for oral hygiene since it could create sores in your mouth. Also it will more than likely create red urine. They are also giving the vincristine via IV.
COMPLETED adding the daunorubicin and vincristine at 15:30
Kate is doing good. She’s groggy but doing okay. Just brought her an ICEE (coke.. uh oh), grilled chicken bits from chik-fil-a and watching TV.
Shes not a fan of how she feels because its different than anything else she felt. She is homesick… missing her puppies. I’m saying she’s emotional which the doc said a side effect of the medicine.
They just put a bag of cefepime and a couple blue pills which we believe is antibiotics (fungal, bacterial, )
Bloodwork at 3am and then more antibiotics at 4:30am
unfortunately Kate didn’t get much sleep (which is another side effect of chemo). She’s also nauseous and did have tingling in her feet but she was able to work out the tingling.
visit from internal medicine at 7:30am to check on her status.
LABs moved up to twice a day because of Chemo they need to keep monitoring blood counts.
As of now, morning labs came back with hemoglobin 7+ & platelets 33 so no blood transfusion at the moment. We’ll have another bloodwork around 5pm tonight and we’ll see what her numbers are then.
We are still on track for going home Friday and we are both hoping that stays true since she is going stir crazy being cooped up in the hospital.
I may leave today to go get a shower and change of clothes since we are here until Friday. I feel disgusting so need a refresher. Hoping they validate the parking since we have been there since Sunday.
Nurses helped kate change into a new gown and I got her a breakfast bagel. They flushed the PICC line to help the machine stop beeping because of blockage. They also recommended her getting up and walking the floor.
Bandage for PICC line will be changed before we go home which will be nice even though we are only home for Saturday and Sunday and back on Monday for an all day treatment but its suppose to be outpatient so we’ll be able to go back home.
She is getting Zofran for nauseous at 9am
Kate got another dose of antibiotics and her daily steroid at 10:15am
steroid: prednisone which she’ll get every day during the induction phase (roughly 28 days)
And still getting the IV drip of cefepime (2gm/100mL) which is also used to treat bacterial infections.
Kate got about 3 hours sleep last night. They said the chemo chemicals would cause sleeplessness. Kate is getting headaches but they give her a Tylenol 3 before going to sleep and it helps relieve the pain and allow her to sleep.
They took blood at 5am and Hemoglobin dropped to 7.1 and Platelets dropped to 24k.
She is also still getting some nausea but the Zofran does help relieve it.
So today we walked around the floor with her pet IV stand closely in hand. She decided to wear a gown with an exposed back which proudly displays the lovely bruises from the bone marrow biopsy and lumbar puncture. We did two Different walks which all together equals about 1/2 mile walked today.
they dropped her bloodwork to once a day instead of the typical twice a day.
No bowl movement since Tuesday so they gave her some Colace.
she should get bloodwork at either 3am or 5am, then blood transfusion. Odd but her hemoglobin has to be less than 7 for her to get a blood transfusion and it was at 7.1 this morning so we all know it will be low 6 probably tomorrow morning which will prompt the blood transfusion allowing Kate and I to go home for the weekend.