SO Cool, SO Sweet!

As the flu season gets underway and is heightened with added concerns due to H1N1, Dr. Bayer told us nearly two weeks ago that the swine flu would likely be deadly in Cathy’s immuno-suppressed state. Since Hope daily invades the germ-pool we know as High School and since her oral fixation makes her an even greater candidate to contract the nasty stuff, Cathy and I have debated getting the vaccination for Hope. She has the greatest likelihood in our family of getting the flu and would pose the greatest difficulty to care for and keep Cathy from contracting it

• past vaccinations have been difficult for Hope and other Angelman Syndrome patients. Do we gamble with possible complications from the vaccination or near certain extreme difficulties in the event Hope contracts the H1N1 flu?


• we had not considered getting the vaccination for Cathy as we were under the impression she couldn't get it in her compromised state
  

Well, on 10/22 it turns out Dr. Bayer informed Cathy that she CAN and should get the vaccine. We also decided Hope would be better served by getting the vaccine than the possible consequences if she didn't.

This is where it gets REAL SWEET AND REAL COOL:

1. As difficult as it is to secure the vaccine with demand outstripping supply, Carol Casey requested that Mrs. and Dr. Erickson seek to get two of the shots for my girls


2. Dr. Erickson solicited the assistance of a Vice President of our local hospital to assist in the hunt.


3. Cathy has a limited window between and before her weekly chemotherapies


4. On Tuesday evening, 10/27, thanks to the assistance of these aforementioned saints, Dr. Erickson administered the shots in our home on the last day before Cathy would have to wait for at least 4 more days!

More reasons for praise and two less reasons for substantial concern. Is this not SO cool and SO sweet. Like manna provided for each new day. "Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." Lamentations 3: 22-24. Perhaps I should end after this glorious scripture, but I must make one cogent observation: Can anyone imagine this type of loving, sacrificial and extremely timely medical care in the future if any currently proposed form of health care reform goes through?

Good News?

Rather than get chemo on Thursday, 10/15, we met with Dr. Bayer. They took blood and Dr. Bayer advised Cathy to eat a high protein diet. We left the office, Cathy "dined" on 1/2 of a beef sandwich from Panera and we ran a couple errands including a visit to Walmart - Cathy in tow in a wheelchair due to her compromised breathing. Upon returning home, the protein "kicked in" and we heard great news from her labs: overall her blood looked great since the infusion on 10/13 and her platelets were up to 101.

Cathy inadvertently received no additional oxygen from the generator for nearly 24 hours from 10/15 PM until early evening 10/16 [I cross-threaded the threads in the "bubble humidifier" lid and air escaped as a result]. When the cause was discovered on Friday night, Cathy opted to go without the added oxygen and breathe solely on her own and did remarkably well thru Monday, 10/19. Her oxygen saturation during the labs was ~97%, a full 1% higher than her sister's for which Cathy chided Kay! Monday was a good day but Tuesday AM the sharp pain in Cathy's side returned and the need for oxygen was once again self-evident.


Thru this last week leading up to chemo on 10/22, Cathy remarked that since she still felt so bad, she lamented not getting chemo on 10/15. Well, it's still early in the marathon, but between labs on Monday, 10/19, and additional labs pre-chemo on Thursday, it turns out her blood looks great AND it appears her elevated liver enzymes have dropped a bit! Praise God !!


Chemo is nasty and Cathy feels fatigued and nauseous but due to the steroids they give during administration, she has a pretty good 24-30 hour period before the wheels fall off. After dinner on Friday, 10/23, Megan Maertens dropped over bearing home-made scones. Upon handing me the plate of delectable scones, Megan and her boyfriend, Nate, sat on the floor at the foot of the recliner ["Cathy's Throne"] and each massaged a foot of Cathy's for ~2 hours, moved to her hands and Megan finished up with a shoulder and scalp massage. Coupled with the "healing touch" and sweet discourse we enjoyed for nearly four hours, Cathy appeared to grow stronger through the night and remained so until nearly noon on Saturday - a full 16 hours of "health" longer than her past experiences.


Today has been rough, her liver continues to be painful and she produces a fair amount of phlegm [by-product of the chemo?] Although the liver has been bothering her for nearly 10 weeks now, it seems she is more aware of a different pain after chemo - we hope and continue to believe that it is the cleansing effect of the "nan-paclitaxel" destroying the tumor.


I hope to post some pictures on the blog, once again, if I can only figure it out without wasting precious hours. It's been a long weekend and I'm going to join Cathy in slumber now. Thanks for checking in and keeping Cathy in your prayers.

Catching Up

Quick updates since it's been so long since we weighed in:
Saturday, 10/3: turns out Cathy's platelets were at 35 [normal range 160-400] and in pain. Quite a reversal from Friday.
Sunday, 10/4: platelets fell to 21 and she got a platelet infusion late that night
Monday, 10/5: platelets at 58 and Cathy dismissed late afternoon with oxygen support. Also had bladder infection [a first]. Wall unit O generator to arrive 6-7 PM. Portable cylinder ran out of O ~9:00 and plug in unit arrived about 10:00 FINALLY
Tuesday, 10/6: Cathy is thin in hands, arms, shoulders and ribs but abnormally bloated in her abdomen, hips, bottom, legs and feet. In addition to inflamation in her liver, additional inches causing significant discomfort.
Wednesday, 10/7: labs revealed platelets fell to 40 and liver enzymes unchanged [at least no increase]. Decent evening but severe pain late in her left kidney
Thursday, 10/8: Cathy got chemo [nan-paclitaxel] with steroids and came home full of energy.
Friday, 10/9: PM the wheels fell off. Called me at the office to say her liver hurt. Different than general / continued pain? We surmised that perhaps the targeted chemo was taking effect!
Weekend was quiet as Cathy felt awful and throat became sore
Monday, 10/12: labs moved to Monday. No news on liver enzymes but orders for blood transfusion [2 units] for Tuesday.
Tuesday, 10/13: Outpatient infusion took 7 hours for two units of blood - all day! Nurses determined throat / mouth sores as THRUSH - she didn't need that!
Wednesday, 10/14: White blood cell count reported too low that Cathy will NOT get chemo on Thursday. Sweet evening, however, in that a HOST of High School youth group ["HYACKS"] students and adult leaders came to pray collectively outside our home for Cathy and our family. A concert of prayer which we appreciate so.

My prayer request specifically for Cathy's health is divided into short and long term. Long term that the chemo would have full effect and remove the tumors and full remission would result. Short term is for Cathy to avoid infection of any flu or other colds and to be able to bear up with all the pain of cancer and side effects of chemo.

Welcome ERABS

Fellow classmates of '79. As Cathy's husband I want to thank you for checking her blog & your concern for her well being. You can bet both she and I would have much rather been catching up with you on this reunion night than where we are now. Cathy is /no, WAS resting comfortably as I write this. I'll not go into much of her current dilemma [you can read about it here] or our last 10 years since the 20th, but I can tell you she is, as she was in High School, well loved, interested in other's well being, energetic, fun and fun-loving. She has grown, however, since High School into a wise, loving and discerning mother, church youth leader, employee, friend and wife [we celebrated our 28th anniversary on August 1st]. Just a little context, as you read: our son Wesley is 22 and attempting to get into the Air Force to pursue special forces in S.E.R.E., our 19 year old daughter, Hope, is handicapped with a genetic defect called Angelman Syndrome and is our constant and sweet companion. Please join our little "community" in praying for Cathy's full recovery and Lisa or Erin can let you know how to get in touch with Cathy during/after her recuperation.

The Latest

An update from Thursday's last post will, again, be mixed with good and bad. Wesley and Hope accompanied me to visit Cathy on Thursday evening and Leanne joined us a little later. We were all encouraged at Cathy's coherence and improvement resulting from some pain medications and the IVIG drip.

Friday AM I was back at the hospital in the morning for Dr. Bayer's rounds. Cathy had received her chemo overnight and was responding very well. While I was at work she had some visitors and appeared to be unfazed. Friday night upon my return with Hope, we were amazed at what we saw. Leanne had come as well and remarked that Cathy looked about 80% of her normal self and I couldn't disagree. Her pain meds were changed slightly and she received her 2nd dose of IVIG.

Saturday, however, was an awful "relapse" into the pain and weakness we had been seeing prior to arriving at the hospital. Before I made it to the hospital in the morning, Cathy called to inform me of her sleepless and uncomfortable night. Her normally concave abdomen has been slightly distended due to the swelling of her liver from the cancer. Cathy is much too private and proper for me to write this but both chemo and the pain meds are each sufficient alone to cause constipation ... she had BOTH and is quite stopped up as a result, adding insult to injury in her abdomen.

The Dr. had indicated that [especially when the tumor has not been surgically removed prior to?] her chemo would present her with good and bad days. The effects of the meds on the tumor themselves might release toxins[?] and make her sick, too. In her experience, if this is the case, it seems a bit odd since she had such a great day immediately following the chemo and this day we'd all like to forget today!

While I took Hope home in the late afternoon for a change of scenery for her and dinner at home, Leanne remained with Cathy. Leanne called from the hospital and offered to care for Hope at home while I returned to visit Cathy. Upon her arrival, Leanne was visibly shaken and crying profusely by Cathy's condition. It's now 9:30 PM and Cathy is miserable with minuscule relief. Now her third night in the hospital ... we'll need to see remarkable improvement for her to come home sometime on Sunday, but not until we know she is good AND stable.

Mixed [but mostly good] News

Wow, what a day. It was over 5 hours from entry at Delnor til Cathy finally got in her room ... and another hour before Cathy saw Dr. Bayer. He is a no nonsense, smart and very compassionate [certainly to his model patient, my wife] oncologist. We got some discouraging news but nothing compared to the GREAT news he brought - Cathy's bone marrow is cancer free!! Her marrow showed no pre-leukemia, no damage from last year's chemo and it is producing "boat loads of platelets".

Thus the "bad" news: evidently her liver is "eating up the platelets" and he diagnosed her with ITP [Idiopathic thrombocytopenic purpura]. This is an autoimmune disease of unknown? origin and as a result her chemotherapy regimen will unfortunately change. Instead of the Loyola based trial with three chemos, she'll get two of them but with different frequency [more on that later].

We are just jazzed between the results of the bone marrow test and the fact that she's in the hospital, getting pain medication, being monitored AND getting the IVIG [platelet protector] she was supposed to get today AND BETTER YET, getting the chemo when the IVIG is finished dripping.

As for the chemo, she will NOT get Carboplatin but tonight will get Avastin along with the "nan [nano albumin bound] paclitaxel". We have no idea if / when she'll get off the chemo. She will get the nan-paclitaxel weekly and Avastin every three weeks. For at least the near term she will also get the IVIG on roughly a monthly basis.

Tonight she, and we, can all rest comfortably knowing that she is getting the proper care she needs. Tomorrow morning we'll meet with Dr. Bayer again and we are going to lobby for her to stay in the hospital until her pain is conquered and / or we can see some noticeable improvement to her abdominal pain.

Tonight our pleading has changed to praise. Thank you Lord!

Where do I begin?

As I post, we are attempting to get Cathy admitted to the hospital [Delnor]. Here for almost 2.5 hours and she's just beginning to get labs in the ER. Cathy has been in significant discomfort and distress with inability to breathe, coughing and abdominal and chest pain due the cancer on her liver. Evenings of late have been very difficult as she tries to get to sleep but finally this morning [to the relief of many, especially me] thru consultation with Dr. Bayer, he thought it best to admit her. Now let me back up.

Monday 9/28 Cathy made her way back to LaGrange Oncology [in Geneva @ Delnor] to have her platelet levels checked and review the PET scan results from Saturday. After taking Dexamethasone [steroid] to help restore her platelets, they actually FELL from 70 on Friday to 58 on Monday. As a result, Dr. Bayer took bone marrow from her hip - OUCH! The full body PET scan showed no advance of the cancer to anywhere else in her body, praise God.

Tuesday saw Cathy at Central DuPage Hospital to get the mediport installed. Between the sedation, pain medication and oxygen, Cathy reports she felt GREAT. But from Tuesday night til now, all of her distress got worse.

Based upon Cathy's weakness and my observation of her Tuesday night and Wednesday morning I called her from my office to inform her I was calling Dr. Bayer to see if they could observe her or admit her to the hospital after chemo on Thursday. Although Cathy told me "NO", against her wishes I called. The nurse said chemo is really only on an outpatient basis [as we knew from her earlier chemo] and informed me she had no chemo scheduled! An appointment was scheduled for 2:00 but Cathy declined when I informed her of it. She called the Drs. office, cancelled the appointment, took a Tylenol and enjoyed a brief sunbath which seemed to help. Evidently Dr. Bayer is awaiting the results of the bone marrow test and will not give her chemo until her platelets are increased ... they scheduled an infusion of some super dooper platelet producing drug for today, 10/1 at 11:00.

Cathy looked no better [worse?] this morning when I left for work but I figured she'd see the Dr. @ 11:00 and they could go from there. Instead, based upon Cathy's own discomfort and Leanne Maerten's urging, Cathy called Dr. Bayer and they decided she should be admitted.

That's the good, bad & ugly [mostly bad & ugly] of our situation. Cathy has now had some pain meds delivered and is resting a bit more comfortably now. More to come as we get more care but for now, please continue to plead to the Lord that we'll get some answers, action and healing.