Thursday, May 30, 2013
First Treatment
I had to work today, but only for the morning. Dropped my wife and Amanda off for her 9:15 appointment for her first Chemo session, and I was back by 12:00...just in time to pick them up and go home...did not leave until closer to 3:30pm. Nothing EVER goes as planned.
Our daughter's veins: They struck again! To quote the head nurse on the Day Ward "these are the smallest veins I have ever seen!" Took them over an hour to actually get a suitable vein. Then, because of the size of her veins, they had to significantly dilute the drugs PLUS they had to spend a lot of time between drugs flushing the lines. It was a long day!
This brings me to then next topic...Chemo delivery systems. When we talked with Amanda's oncologist, we warned her about this very issue. She assured us that the nurses were good, but if there was a problem they could insert a PICC line. We had done a lot of research at this point and asked about a Port, but she kinda acted like this was not an option in her eyes. A PICC allows the drugs to enter the blood stream just above the heart muscle through a catheter in your vein. Basically does not allow the drugs to touch the veins directly, but it is rather cumbersome (basically imagine an IV line hanging semi-permanently out of your arm) and certainly not something that goes with that all important Grad Dress! A Port is implanted just below the skin and also has a short catheter directly above the heart and is usually implanted in the upper chest. It does show a bit because it causes a small protrusion, but it is sealed by your own skin and allows the patient to be active (swimming, non-contact sports, etc.).
Well, the nurses on the unit commented that the Power Port models are relatively new systems in Canada and a lot of doctors are not comfortable with them - like to stay with the old ways. The nurses contacted Amanda's oncologist and insisted that she get a port...short exchange later and they won - port to be implanted next week (yay!)
This brings me to my final thought and lesson of the day. If you need anything done, ask a nurse! We are on a steep learning curve, but we are learning!
Tuesday, May 28, 2013
Next Office Visit & Chemo School
At the Oncologist office again today. Basically needed to review the results of the bloodwork, etc and to go over any last minute questions before Amanda's first Chemo treatment on Thursday.
Doctor confirmed that Amanda has "Hodgkins Lymphoma, Nodular Sclerosis type, Stage II-B, unfavorable" The unfavorable was due to an ESR of 91 (normal is under 10 and they don't like the rate to be > 30 with "B" symptoms). Still no results from the bone marrow biopsy (kinda frustrating!). We are hoping that it is negative as a positive result would will jump the staging up to stage IV-B and the five year survival rate would have significantly reduced from the 85-90% that her current diagnosis carries with it.
Long story short, looks like that Amanda is going to see about 5-6 months of treatment with 4 cycles of ABVD Chemotherapy and possible radiation therapy after that. The oncologist was hoping to avoid the radiation when we visited last week, but with the "B" symptoms and the unfavorable status there is a strong chance Amanda will have to endure that therapy as well once the Chemo is done. Chemo treatments are scheduled for every 15 days for the next 4 months at a minimum and this may be extended to 6 months. Gonna be a tough road for our girl, but she is as strong as there is and we have no doubt that she will pull through this. Tricky thing with this regiment is that your counts start to bottom out around day 7 and only begin to improve around day 14. Problem is that she gets her next treatment then. Patients on the regime really never have a chance to recover from the previous treatment. We are warned that Amanda most likely will have to delay treatment a couple of times as her counts will be too low. God obviously has something special in mind for our girl, and this is a part of her life journey that is needed in order to fulfill her purpose.
Oh...interesting side bar...the pain that Amanda has had consistently since her Excisional Biopsy on her right side has magically left ever since she got those antibiotics in the ER on Thursday...hmmm, perhaps the ER staff knew what they were talking about. Maybe there was another reason her WBC were at 14,000 and 18,000?
Next stop was Chemo-school. Probably one of the most interesting experiences we have had yet. My wife, myself and Amanda sat in the back of a SMALL room (only row with 3 seats...plus had a nice counter behind me I could put my Tim Hortons on - sorry, gotta be Canadian to get that one!). There were about 8 other new patients there (no-one under the age of 40). After the session, the RN doing the session asked "for the family in the back to stay"...she was SOOOO amazing. Sat down and had a one-on-one talk with Amanda, She must have spent 45 minutes with us basically giving Amanda all of the little hints and really tailoring information to her age.
I thing that is one of the hardest things that she is having to deal with. There are not patients around that she can identify with in terms of age. It is one thing that has us questioning the wisdom of not getting her treatment done through the Stollery Childrens Hospital, but the nurse assured Amanda that she would be coddled and mother by every nurse there - they were all moms, and they would take care of her - it was a special moment that I think I will always remember and be thankful for.
Oh...Happy Birthday to my Wife!!!
Doctor confirmed that Amanda has "Hodgkins Lymphoma, Nodular Sclerosis type, Stage II-B, unfavorable" The unfavorable was due to an ESR of 91 (normal is under 10 and they don't like the rate to be > 30 with "B" symptoms). Still no results from the bone marrow biopsy (kinda frustrating!). We are hoping that it is negative as a positive result would will jump the staging up to stage IV-B and the five year survival rate would have significantly reduced from the 85-90% that her current diagnosis carries with it.
Long story short, looks like that Amanda is going to see about 5-6 months of treatment with 4 cycles of ABVD Chemotherapy and possible radiation therapy after that. The oncologist was hoping to avoid the radiation when we visited last week, but with the "B" symptoms and the unfavorable status there is a strong chance Amanda will have to endure that therapy as well once the Chemo is done. Chemo treatments are scheduled for every 15 days for the next 4 months at a minimum and this may be extended to 6 months. Gonna be a tough road for our girl, but she is as strong as there is and we have no doubt that she will pull through this. Tricky thing with this regiment is that your counts start to bottom out around day 7 and only begin to improve around day 14. Problem is that she gets her next treatment then. Patients on the regime really never have a chance to recover from the previous treatment. We are warned that Amanda most likely will have to delay treatment a couple of times as her counts will be too low. God obviously has something special in mind for our girl, and this is a part of her life journey that is needed in order to fulfill her purpose.
Oh...interesting side bar...the pain that Amanda has had consistently since her Excisional Biopsy on her right side has magically left ever since she got those antibiotics in the ER on Thursday...hmmm, perhaps the ER staff knew what they were talking about. Maybe there was another reason her WBC were at 14,000 and 18,000?
Next stop was Chemo-school. Probably one of the most interesting experiences we have had yet. My wife, myself and Amanda sat in the back of a SMALL room (only row with 3 seats...plus had a nice counter behind me I could put my Tim Hortons on - sorry, gotta be Canadian to get that one!). There were about 8 other new patients there (no-one under the age of 40). After the session, the RN doing the session asked "for the family in the back to stay"...she was SOOOO amazing. Sat down and had a one-on-one talk with Amanda, She must have spent 45 minutes with us basically giving Amanda all of the little hints and really tailoring information to her age.
I thing that is one of the hardest things that she is having to deal with. There are not patients around that she can identify with in terms of age. It is one thing that has us questioning the wisdom of not getting her treatment done through the Stollery Childrens Hospital, but the nurse assured Amanda that she would be coddled and mother by every nurse there - they were all moms, and they would take care of her - it was a special moment that I think I will always remember and be thankful for.
Oh...Happy Birthday to my Wife!!!
Friday, May 24, 2013
First ER Visit: Oh Joy!
Wife and I got home from work, and Amanda was in obvious distress. Told us that the night before she was getting chills, and that she was really hot and not feeling well. Quick check with the thermometer...102.8 (39.2 Celsius for our fellow Canadians). Made a quick call to our Provincial Health Link service and they told us to take her to Emergency.
Interesting thing about Emergency rooms and Cancer Patients...Got to the triage nurse and confirmed elevated temperature and pulse rate was about 125 at rest. Of course we are concerned about an infection from the Bone Marrow biopsy and Amanda's is also complaining of a new pain in her upper right chest that has us concerned of a possible blood clot. Got sent over to registration and no sooner did she sit down, an orderly came over, put a mask on her and immediately took her back to a bed! I had to stay and register her and get her chart from the registration desk.
Anyhow, long story short, ER doc is convinced Amanda has an infection somewhere and a possible clot. She warned us to expect an overnight stay, but needed to consult with a hematologist to have her admitted. In the mean time, she hung a round of antibiotics and ordered some additional blood work (oh goodie - more needles!), chest X-Ray, etc.
Around midnight, in waltzes in the Hematologist...I'm pretty sure he is an intern, and if he is I am just about to the point that any interns that see my daughter will immediately be shown the exit! FIRST thing out of his mouth is something to the effect of "I came down here, but expected to see someone much sicker"...REALLY! Keep in mind that at this point Amanda has had two bags of Saline and the antibiotics had been in her system for over 2 hours. She was feeling better admittedly, but what an idiot! Tells us that her d-dimer is elevated but not significantly enough so is cancelling the lung scan. Her WBC levels are at around 18,000 but that they were at 14,000 two days ago so he was attributing that to her disease. Basically punted us out of the ER...which franky is just fine with everyone by now. My wife and I get the impression that the ER staff are miffed at the situation, especially when one nurse comes in and says "we get to go home...for now". Kinda funny and kinda not so funny. Oh well we wanted to go home, and Amanda seemed better.
Tuesday, May 21, 2013
Diagnosis
Amanda has been struggling with extreme fatigue since October of 2012. At the time, we suspected that she was not doing well on her migraine medications. In any case, it got bad enough that she missed a couple of weeks of school in December and had to pull out of her grade 12 AP Calculus course when she missed most of the beginning of the instruction for the course. Also missed a number of soccer practices, which is competely unlike her! Amber and I were concerned enough that we ended up getting her referred by her pediatician to see a Cardiologist as well as having a long conversation with her Neurologist about trying to wean her off of some of her medications she takes to reduce the some of her migraine sypmtoms; one of which is notorious for causing fatigue.
In January of this year, a lymph node on the right side of her neck swelled up to about the size of an orange, but other than a cough she also developed, she did not have any other symptoms. We took her into a local doctor and he suspected that she had an infection and prescribed antibiotics. Only thing that seemed out of place was that weird cough when the swelling started. The swelling went down, but not away and then came back again - as did the cough. Back to the doctor and another round of antibiotics. Once again the swelling went down. Around spring break (end of March), Amber and I were in Victoria, BC for a quick holiday and Amanda's grandmother called us about the lymph node being swollen again. She took her back to the same doctor and he basically told Amanda that she obviously had an "over-active" node and that if it did not go back down in 6 months to come back and he would refer her to a surgeon to have it removed. Not satisfied with that response, Amber took Amanda into her doctor for a second opinion. Apparently the look that Amber's doctor gave mom was kinda scary. She basically told Amber that Amanda needed to be seen by a surgeon ASAP. Next thing we knew, things started moving in very fast and scary directions.
The ENT that Amanda was referred to was an "ENT-Oncologist". Basically specializes in the surgical aspects of neck and throat cancers. He did a thorough examination and then scheduled her for a PET-CT the next day and a FNA (Fine Needle Aspiration - type of biopsy) the following day. We were back in his office about a week and a half later and were told that the PET-CT was positive with significant uptake in her neck, collar bone and chest area, but that the FNB was negative...then he told us that he did not believe that result. End of the day; surgery was scheduled two days later for an excisional biopsy. Another week wait for the results and we had confirmation...Hodgkin's Lymphoma. We had a pretty good idea what was coming, so it was kinda odd when we got the news. There were no tears (yet); it was no surprise to any of us at this point in time. Amber and I were watching Amanda's health significantly decline over the past few weeks, and additional symptoms were beginning to show (night sweats, constant fever).
Amanda saw her oncologist for the first time on May 21st. Dr. Taparia is a very nice lady that once again confirmed her diagnosis. Unfortanantly, Amanda had to do a couple of additional tests to "stage" the disease. First up...bone marrow biopsy. Apparently Amanda's bones are exceptionally healthy as there was a significant struggle to get the sample - poor girl...talk about excruciating pain! Then she was off to get more lab work and a lung function test (apparently one of the chemo drugs she is going to be on can affect your lungs in rather nasty ways, so they need to know if her lungs can handle it and to get a baseline measurement).
In January of this year, a lymph node on the right side of her neck swelled up to about the size of an orange, but other than a cough she also developed, she did not have any other symptoms. We took her into a local doctor and he suspected that she had an infection and prescribed antibiotics. Only thing that seemed out of place was that weird cough when the swelling started. The swelling went down, but not away and then came back again - as did the cough. Back to the doctor and another round of antibiotics. Once again the swelling went down. Around spring break (end of March), Amber and I were in Victoria, BC for a quick holiday and Amanda's grandmother called us about the lymph node being swollen again. She took her back to the same doctor and he basically told Amanda that she obviously had an "over-active" node and that if it did not go back down in 6 months to come back and he would refer her to a surgeon to have it removed. Not satisfied with that response, Amber took Amanda into her doctor for a second opinion. Apparently the look that Amber's doctor gave mom was kinda scary. She basically told Amber that Amanda needed to be seen by a surgeon ASAP. Next thing we knew, things started moving in very fast and scary directions.
The ENT that Amanda was referred to was an "ENT-Oncologist". Basically specializes in the surgical aspects of neck and throat cancers. He did a thorough examination and then scheduled her for a PET-CT the next day and a FNA (Fine Needle Aspiration - type of biopsy) the following day. We were back in his office about a week and a half later and were told that the PET-CT was positive with significant uptake in her neck, collar bone and chest area, but that the FNB was negative...then he told us that he did not believe that result. End of the day; surgery was scheduled two days later for an excisional biopsy. Another week wait for the results and we had confirmation...Hodgkin's Lymphoma. We had a pretty good idea what was coming, so it was kinda odd when we got the news. There were no tears (yet); it was no surprise to any of us at this point in time. Amber and I were watching Amanda's health significantly decline over the past few weeks, and additional symptoms were beginning to show (night sweats, constant fever).
Amanda saw her oncologist for the first time on May 21st. Dr. Taparia is a very nice lady that once again confirmed her diagnosis. Unfortanantly, Amanda had to do a couple of additional tests to "stage" the disease. First up...bone marrow biopsy. Apparently Amanda's bones are exceptionally healthy as there was a significant struggle to get the sample - poor girl...talk about excruciating pain! Then she was off to get more lab work and a lung function test (apparently one of the chemo drugs she is going to be on can affect your lungs in rather nasty ways, so they need to know if her lungs can handle it and to get a baseline measurement).
Sunday, May 19, 2013
Welcome!
This is a Blog for family and friends that are interested in following how Amanda is doing with her struggles with Hodkin's Lymphoma. When we think about it, we do have quite a large family and extended family and it really would be quite impossible to keep up with everyone with her battle in any other way. It seems like a good idea to provide a central location where everyone can be updated on how she is doing and some of the stories that we have to tell...some good, some bad, some funny, some not so funny.
A ridiculous amount of "stuff" has happened to our daughter and family in a very short period of time. Quite frankly, we could write a book that would be her story over the past 6+ months. On that note, here we go!!
A ridiculous amount of "stuff" has happened to our daughter and family in a very short period of time. Quite frankly, we could write a book that would be her story over the past 6+ months. On that note, here we go!!
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