Another Trip to MICU

Dear Fod's,

Not a good day for our girl today. I arrived at around 10:45 and Debbie was complaining of a hematoma on the left side of her tongue. She had something that looked like a blood blister the size of a dime on her tongue and she was having trouble swallowing. While her airway seemed clear, her pain continued to increase and she could not take her meds. As you may recall, because of the failure of the central line a few days ago, they moved most of her meds to "by mouth". Today, the mouth was shutting down!

We asked to see the intern and the assigned nurse and their solution was a lidocane mouthwash. While it helped with the pain, it did not treat the problem. Her tongue continued to swell and she was having difficulty swallowing.

Luckily, Nurse Patty from the 6th floor came for a visit and she saw what was going on. She immediately recognized that the lathargic treatment plan would eventually put Debbie's airway at risk. She quickly assessed the situation and like a true "Top" Sargeant she kicked butt and took some names. While not on her assigned floor, Patty made things happen in the trenches! Within 5 minutes the room was filled with HUP specialists who took charge of the situation, administered some steroids, and with consultation with the attending physician, decided to try a medication approach rather that opening an airway. Debbie was scoped by ENT specialists and they felt that the best way to keep an eye on her was in the MICU. While she hates it there, she needs to be there tonight. Today all hats are off to Nurse Patty. She saved the day!

Within an hour, Debbie was talking and her swollen tongue was subsiding. Mike and Laurie were there when they wheeled Debbie from Rhoades 3 to Founders 9. As is customary, we unloaded Debbie's room and carted her stuff off to the car. Later, we visited with Debbie after she was in the MICU and she is continuing to improve. Hopefully, she will be moved back to Rhoades 6 or 7 tomorrow and she can resume her recovery.

Thanks to all for your cards and blogs. When Debbie feels better, she does have some reading to catch up on.

Debbie sends her love to all.

Thursday AM Update

Hi Everyone,

Sorry it has been awhile since we've written. Typically there is a lull in the action during our daily visits to HUP but with this admission, that has not been the case. I went in on Sunday afternoon and ended up staying until Tuesday afternoon. I would tag team with my brother Joe and Dad as Mike has been sick since Sunday.

Mom has had terrible fevers this visit, sometimes above 104 degrees. With the onset of the fevers, her blood pressure drops dangerously low (sometimes 80s over 40s) and her heart rate soars to 140 beats per minute, sometimes even higher. As soon as the rigors start we'd take her temp and it would be 98 degrees. Within 10 minutes the temp would be up to 102 and climbing. One of our day nurses had the idea on Tuesday morning to start Ativan as soon as the fever symptoms began. This seems to control the rigors, which have been incredibly intense for mom. Controlling the rigors seems to keep the fever's side affects from getting out of control. The ativan cannot control the fever itself, however, doses of tylenol seem to work temporarily.

Mom's left shoulder began to bother her prior to her admission but with the cellulitis in the right arm, we all kind of forgot about the shoulder until earlier this week. We showed the doctors, nurses, students, and anyone else who would examine her throughout the day. Everyone kind of concluded that Mom's shoulder was bugging her from the rigors and being in bed. Each morning the shoulder pain seemed to worsen to the point yesterday that she could no longer use that arm. Remember the right arm already has very limited mobility. The oncologist team suggested yesterday that it was possible the PIC line had become clotted off, causing the swelling and pain and possibly an infection. Joey was there with her when they decided to take her down for some vascular imaging. The imaging team noticed right away that there were numerous clots surrounding the line and this could impede the absorption of the medications administered through the PIC. Mom swears that it did not impact the rate of fluids on board - she has now gained 25 pounds since last Wednesday when she was admitted. There is no chance they will back off on the fluids because that is what keeps her blood pressure in a normal range. When they tried to discontinue them over the weekend, mom became light headed and dizzy.

The docs removed the PIC line last night. Mom spiked a fever of 104 around midnight. I still have my fingers crossed that the PIC line caused a great deal of these fevers and they will resolve in a few more days. No definitive answers here on that, however, the blood cultures continue to come back negative, meaning mom is not becoming septic, her immune system is getting stronger each day. Her WBC is up to 3.2 and her ANC is above 1000. Her blood samples also continue to come back negative for any leukemic blasts. No one wants to do a bone marrow or discuss further treatment options until mom can overcome this current storm.

One thing we did learn for certain this week is the results of mom's skin biopsy. As you may recall, we've been referring to those bumps on her legs as 'leukemia bumps.' It turns out that they are benign, and are also not a source of infection for her. The bumps are a sign of Sweets Syndrome . The doctors have definitively concluded that this is what the bumps are. As long as they remain benign, they are entirely harmless. They typically occur in tandem with a form of cancer, most commonly AML - but Sweet's Syndrome itself is pretty rare.

So for now mom has two tiny IVs in her finger and wrist. Neither arm is a candidate for an IV at this point since both are so swollen from the elbow up. There has not been discussion of using another Hickman catheter because mom believes there were some clots involved with that as well. The docs will continue to get creative with IV placement and have switched everything that they can over to oral medication (PO) when possible. Mom has been needing blood nearly every day and platelets every other day. The doctors say this is from the high fevers and that this causes the body to burn through these cells more quickly. This happens particularly fast when the cells in the body are a donor's. They do believe as the fevers resolve mom's need for blood products will too.

Please don't panic when you aren't able to reach mom. With the Dilaudid and Ativan combination, a lot of her time is spent sleeping or in a delirious state. There has been constant interruptions from the different teams monitoring her, as I can attest to, and this continues all night long. The sleep deprivation carries over and has a cumulative affect on her. I've witnessed her fall asleep while talking on the phone. In between fevers, there are glimpses of mom as we all know her, arguing with me about sleeping over, insisting on taking her own showers, offering Joe and I anything in her fridge ("Have some cranberry juice...I saved you a turkey sandwich from lunch, etc.") She is by no means giving up her fight, and continues to be blessed to have the most wonderful and caring people in her life. We are thankful for you and ask you continue to pray that the fevers will resolve so mom can return to Tennis Way very soon.

Love,

Jess

Weekend Woes

Hello everyone,

Mom had a rough weekend but as I type this she is sleeping soundly, thanks to Ativan, Dilaudid, and Tylenol. Her fevers have been spiking above 103 on and off the entire weekend. The nurses have been giving her Tylenol every four hours and the fevers subside temporarily. We are not sure at this point if the fevers are related to infection, neutropenia, or leukemia. Her absolute neutrophil count (ANC) was down to a ZERO yesterday and we were in a panic because mom's arm still has a massive infection deep within the muscle. By the grace of God, her ANC is up to 640 today, which should be enough for mom to fight off whatever this infection is. For now, mom's arm does not show any improvement despite the three antibiotics and one antifungal that she is receiving.

Earlier today mom's blood pressure was dangerously low and she began to feel dizzy. When she went to the bathroom, she accidentally disconnected one of the IVs running to her PIC line. Everything is fine now but she's under strict instruction to call the nurse before getting out of bed. I don't exactly trust her to call and am also concerned about her blood pressure. The docs decided to discontinue the fluids for mom since she gained 12 pounds over the last four days. She has gotten quite swollen, however, the fluids somehow keep her blood pressure up.

I am hanging out at HUP tonight to keep an eye on things. I hope to meet with the doctors in the morning and maybe we'll be able to get some answers on what is going on. We haven't received any explanations for the new 'leukemia bumps' that appear each day. Mom also has a new hematoma on her gum that is causing her cheek to swell. We have just witnessed a lot of strange symptoms the last few days and are a bit nervous about them all.

Thanks for the calls, cards, and well wishes. Mom's been pretty loopy with the narcotics on board but we are all so greatful for your kindness. We will keep you posted as we learn more - but for now, remember that no news is good news!

Love,

Jess

September 21, 2007 Update

Dear Fods,

We are sitting here on Friday afternoon visiting with Debbie. Joey took a train down and I came down mid-afternoon from the office.

Debbie says,

It has been a rough week so far. Two of the old injection sites from the vidaza became very inflamed early in the week and because I have not had a white count, turned into a huge cellulitis. We had a regular appointment on Wednesday and we got there in the nik of time. As we were sitting at Penn, the arm was literally starting to swell up. I was admitted on Wednesday and am now on four antibiotics (for the med crew, vanco., gent., levo., and cleocin) and the arm continues to get worse. The cellulitis now extends from under my arm to my wrist. Temps range from 101 to 103 and there is terrible pain in my right arm (thank God for the pain meds!)

Since Wednesday I have had 2 CAT scans, 1 MRI, 3 chest X-rays, 2 ultrasounds, four sets of blood cultures and two skin biopsies (of the leukemia bumps not the vidaza site). The MRI showed massive swelling and inflammation of the entire arm and the point of concern is that it may spread to my muscles -- yikes!.

So everybody, please kick up the prayers that my WBC will come backup so that I can fight this new thing.

My favorite infectous disease doctor Mindy Schuster suggested an orthopedic surgeon to see me as there is some concern about compartmental syndrome. Right now, we just have to pray and keep the antibiotics going and hope that the cellulitis stops spreading and begins to subside.

On a lighter note, they have stopped the clinical trial and the nausea is gone! My appetite is pretty good considering I am at HUP -- but outside food only! There is a new deli in Penn Towers and they make really good soup. Today I had corn chowder and I ate the whole bowl.

Jessie is coming up for the weekend and she will visit with me on Saturday and Sunday. It will be nice to have the three kids together.

Thank you for all of the calls, blogs and cards. It has been a very hectic few days with all of the tests they are taking, but they are working hard to get on top of this. I will try to post again soon. I think I may be here for a little while this time.

I hope all of you and your families are well. I am glad all of the college freshmen have settled in. Mary Day when Jessie left, I cried every day for three weeks missing her so much. But I am sure Patrick is as happy as he can be.

Love to you all.

Debbie

Mom Admitted to HUP

Just a quick update to let you know mom met with Dr. Porter today and he decided to admit her to the hospital to administer some big gun antibiotics and keep her isolated. Mom's arms have been bothering her and they'd like to do a biopsy of one of the leukemia bumps and an ultrasound of her left shoulder. Since her WBC has been <1 and her ANC <500, it is best for her to be in the hospital and have access to the strong pain killers and antibiotics. We are hopeful after a few days rest Mom will be home again. We will keep you posted.

Love,

Jess

Light the Night 2007

Mom finished her fourth round of chemo on Monday and has been resting at home. She is holding up pretty well - but is very tired. Her counts continue to remain very low so she is taking every precaution to prevent infection. She sees Dr. Porter next week and I imagine she will write more after meeting with him.

I wanted to give you all an update on our status with Light the Night 2007. Team Teklits is in full gear down here in DC! We have a benefit concert coming up at the end of the month and I wanted to share the details with you. It is geared towards the younger crowd (kids under 10) and their parents. We are very excited about this event, and hope it will raise interest and awareness for Light the Night within our community here in Virginia.




If you aren't able to join us this year, consider joining Team MazzTek, which is organized by Megan Noon, the sweet niece of our dear friend Bob Mazzola. You can learn more about Team MazzTek at Light the Night

For those of you unable to walk this year, it is easy to donate! Please email me if you need more information.

Have a great weekend everyone!

Jessie

Labor Day at the Beach with My Babies

Hey Everybody,

Jessie’s here typing for me because Joe quit and left to go to Mexico and sell donkeys. Nah, we’re all here at the beach house enjoying a lovely sunny day. Sorry I haven’t posted but I have not felt well since leaving the hospital. I still have the sinusitis and was running low grade fevers until they added a third antibiotic.

I saw Dr. Porter yesterday and unfortunately my white count, which had returned to normal last week, is back down to 2.5. He was concerned about re-starting the chemo but was also concerned to not start it, knowing that there is leukemia lurking. So I’m scheduled to start Round 4 of the trial on Tuesday, 9/4.

If I get sick this time that will be it for the trial. The alternative is, of course, six weeks in the hospital with re-induction chemotherapy. As you all know, that is not an option you want to consider. I will be monitored more closely this round so everyone will be watching my white count. So let’s all pray this sinusitis finally goes away and I make it through Round 4. They are reducing the dosage of the drugs this time. Hopefully it will be strong enough to keep the leukemia at bay and not so strong to not knock my white count back down to zero, leaving me vulnerable to infection.

Right now we’re enjoy a beautiful sunny day at the beach with Jess, Walid and the babies. They can sit for hours on the beach just playing in the sand. We’re planning on staying until Tuesday and then heading to HUP on our way home to begin the trial.

I hope you’re all enjoying this beautiful weather we are having, sunny, 80 degrees, and NO humidity. I hope all the college freshmen are settling in with their roommates and are enjoying the college experience. From what I’ve heard everyone is doing well. I wish you all a Happy Holiday, health, and happiness, and lots of hugs and kisses. Thank you for the continued cards, blogs, and phone calls. Each and every correspondence means so much.

Love to you all!

Debbie