Yesterday Kim had a Hickman line inserted at Toronto General in preparation for the stem cell transplant and also to use when getting her third round of R-GDP. Kim has always had bad veins and after all the sticking they've gotten over the last seven months they've only become worse. We were sad when her PICC line failed so it's great that they've put a new line in. The Hickman line is bigger (necessary for the transplant) and should be less likely to become blocked. Also a home-care nurse will again be visiting us regularly to help take care of the line.

The procedure for getting the line is a bit more intensive than the one for the PICC line, but it was still not too bad. We got Kim home by about 1pm only to find that Kim's doctor at St. Michael's had been trying to get a hold of us. The results from the spinal CT scan were in. In general it looked fine and there seems to be a non-cancer reason for Kim's intense back and leg pain. She appears to have a minor case of congenital lumbar spinal stenosis. This is a narrowing of the spinal canal that can cause compression of nerves and blood vessels leading to pain in the back and legs. It seems likely that some combination of the Neupogen, the chemo drugs, the lack of physical activity and the stress has caused the condition to assert itself a bit more strongly. Kim's always had minor back complaints but nothing serious enough to think twice about. It's interesting to know that there is a very specific cause. Once Kim recovers from the cancer she can look into treatments for the spinal stenosis, although apart from surgery it sounds like the best treatment is exercise and healthy living.

Anyway, the CT scan report went on at great lengths about the spinal stenosis, and then, right at the end, the report had a single sentence mentioning an extremely minor "asymmetry" in one of Kim's root nerves. This is why the doctor was calling us so urgently. Nerves are soft tissue and so they don't show up well on CT scans. You need to do an MRI. However the MRI machines at hospitals are notoriously overbooked. There was an opening yesterday afternoon and Kim's doctor really wanted to get a better look to rule out a tumour in the spine (which would be a very bad thing). Fortunately we were able to make it back to the hospital to catch the MRI opening and Kim was in and out before supper. The MRI machine is in the deepest part of the basement of the hospital and was kind of a freaky experience. Well, it was freaky for me at least, Kim didn't seem to mind.

In addition to the MRI, Kim's doctor will be giving her a lumbar puncture (ie. needle in the spine) on Thursday in order to collect some cerebrospinal fluid to test for cancer. The doctor will also inject a special type of chemotherapy at the same time just in case there is cancer present. In the worst case it will be treatment, otherwise it will have a prophylactic effect.

Kim's doctor at St. Michael's has been great through all of this recent craziness. She's explained things really well and has been super fast and proactive to make sure nothing gets in the way of the transplant. Unfortunately if there is cancer in Kim's spine it will probably derail the transplant as it is unlikely the high-dose chemotherapy would work in that case. However it's better to find this out before going through such a difficult procedure rather than doing it and only discovering later that the cancer isn't cured.

The bone pain from the Neupogen got quite severe for Kim on Wednesday and Thursday so Kim called up the doctor to find out what to do. Kim's normal doctor wasn't around that day, but the on-call doctor was able to fax a prescription for Tylenol 3 (with codeine) to our pharmacy and that stuff did the trick for the pain.

Yesterday Kim was supposed to get a bunch of tests done at PMH in preparation for the stem cell transplant including a dental check up, blood tests, a lung test and a heart test. However, Kim's normal doctor at St. Michael's returned from her absence and was concerned about the bone pain Kim was having. So, just as we were leaving for the tests at PMH we got a call from the doctor at St. Michael's asking Kim to come in for an exam to rule out other possible reasons for the pain. We had to quickly call up the co-ordinator nurse at PMH to figure out what to do about all the other tests. The co-ordinator nurse proceeded to call Kim's doctor at St. Michael's and they ultimately decided that Kim should still go to PMH in the morning for her blood tests and dental check-up but then go to St. Michael's in the afternoon for the exam. There is still plenty of time for the heart and lung tests so those are being rescheduled.

Anyway, everything went fine in the morning at PMH. The dentist was super friendly and helpful and the blood test was fast. The problems started when we got back to St. Michael's. The doctor gave Kim a thorough exam and concluded the pain was probably just a delayed reaction to the Neupogen, but she ordered a CT scan anyway just to be sure. She wanted to be extra-cautious in order to avoid any problems that might delay the transplant procedure.

Kim may be mildly allergic to the contrast dye they inject when they do CT scans. On one of her first CT scans she got a very very light rash. Unfortunately any reaction requires that in the future a very strict protocol be followed before the medical imaging department will do the scan. This normally involves taking steroids 13 hours in advance and Benadryl 30 minutes in advance. Unfortunately, the doctor wanted the scan done immediately so that we wouldn't delay any of the critical stuff happening next week (third round of R-GDP and insertion of the Hickman line). So the doctor called up the medical imaging department and talked with the doctor there about how to get around the standard reaction protocol. They determined that it would be acceptable for Kim's doctor to give her steroids by IV and then Kim could immediately go up for her scan and the people at medical imaging would give Kim the Benadryl by IV just before they were ready to do her scan.

This all seemed reasonable since they had done something similar when Kim needed a CT scan during her last hospital stay. So Kim got her steroids and then we went up to get the scan. They immediately sent us back to the doctor though because medical imaging is a big place and the people we talked to claimed that they were unable to give Kim the IV Benadryl (they were not aware of Kim's doctor's pre-approval for this). So we went back to the doctor (who was pretty angry about our treatment at medical imaging) and she gave Kim the IV Benadryl. Then we went back to medical imaging where we were told to wait for our turn. All good. Unfortunately a trauma case came in through the ER and Kim had to wait longer than expected for her scan. So by the time Kim's turn came for the scan it had been too long since she received the Benadryl and they had to give her more. Generally things like the trauma are the reason you try to get the medical imaging department to give you the Benadryl since they know when the scan will actually happen. Frustrating!

Anyway the scan eventually happened but on the first try the tech forgot to unlock Kim's IV properly and the line burst splashing the dye all over Kim. Sigh.

We eventually got out of there though, and after a frustrating amount of traffic we got home. But at home we found our driveway blocked because a car accident had happened literally in front of our house. There were three police cars and everything. The accident looked extremely minor but it took them forever to clear it.

The good news though is that today Kim's bone pain has mostly gone away and she hasn't had to take any of the Tylenol 3 since Friday morning. So it seems like it really was the Neupogen and not anything more sinister. We'll get the results from the scan on Monday or Tuesday likely when Kim goes in for her third round of R-GDP.

Yesterday Kim had her stem cell collection and it was a long and tiring day. It was also a very successful day. They needed to collect 5 million cells and were able to get 6 million so they have plenty to spare. The procedure itself was pretty easy. It's very similar to dialysis. They take blood out of one arm, run it through a centrifuge to separate out the stem cells and then put the remaining parts of the blood back into Kim through her other arm. They cycle her entire blood supply through the machine multiple times. It took about three hours to do the actual collection plus another three to four hours of prep time and waiting time.

The biggest side-effect with all the collection stuff so far has been bone pain. After the mobilization chemotherapy Kim had to get daily injections of Neupogen to help increase the number of stem cells floating around her blood stream. The injections worked extremely well but unfortunately the better the drug works the more it causes pain in the bones (where the cells are generated). The effects should subside in a few days though.

Next week Kim will get her third round of R-GDP and then if all is good they'll do the transplant.

In other news, Patrick and Toni and their beautiful 15 month old daughter Kiera are visiting us from Australia and we couldn't be happier to see them. It's a very nice change of pace from all the cancer stuff.

Today was the big CT scan result day that would determine if Kim is a candidate for the stem cell transplant. We had all got ourselves into a very binary frame of mind. Either today would be excellent news and Kim would start a treatment that would hopefully end this whole mess or it would be very bad news. We were not prepared for an answer that falls in the vast grey area between those two extremes.

The two rounds of R-GDP reduced Kim's cancer by about 43%. This is good, but not good enough to do the transplant. However, because it is close, they are "giving her the benefit of the doubt." They are going to proceed with the stem cell collection as planned over the next few weeks. Then Kim will get a third round of R-GDP back at St. Michael's and then they will scan her again. The goal is to get the cancer to at least a 50% reduction. Assuming this happens the high-dose chemotherapy and stem cell transplant will occur later in June.

Today Kim started the mobilization chemotherapy that will facilitate the stem cell collection. This occurred at PMH and went extremely smoothly. They are super-well organized there. She goes back tomorrow and Friday for more treatment and then next week is a resting week. The target collection day is still May 30th.

The benefit of doing the collection before the third round of R-GDP is that we get the cells collected and stored without rushing and they will be ready to use as soon as the third round is done. Also the fact that PMH is willing to invest time and resources to do the collection before the treatment suggests they think the extra round will be successful.

The mobilization chemotherapy is composed of two drugs. The first is cyclophosphamide which is the 'C' drug from the original R-CHOP regimen. However in this case it is given at dose that is three times stronger. The other drug is etoposide which is a drug Kim hasn't received before but is used to treat Lymphoma in other parts of the world. The important thing is that the mobilization chemotherapy will also help treat the cancer so it's not like Kim will be taking a break from treatment to do the stem cell collection. There will still be drugs fighting the disease.

Waiting is so hard. Now we have to wait longer. At least the R-GDP made had a good impact on the cancer so far though. 43% is a good number.

On Friday Kim, her mom and I all went to Princess Margaret Hospital for Kim's consult concerning the stem cell transplant. We spoke with two doctors and the co-ordinating nurse and they were all very friendly and helpful. PMH seems like an amazing facility too, it's very big and shiny and stuff.

Anyway, the plan is as follows. On Tuesday Kim will get a CT scan at St. Michael's and then on Wednesday the doctors at PMH will hopefully be able to compare the results to the CT scan that was taken before the salvage chemo started. I say "hopefully," just because the timing is a bit tight. Assuming the scan is received in time, and assuming it shows that the cancer is responding well enough to the salvage chemo they will begin the preparation for the transplant that same day (Wednesday).

As I mentioned before, the transplant does not actually do anything to help cure the cancer. Rather it is a necessity in order to facilitate recovery from extremely high-dose chemotherapy given to attempt to kill the cancer all at once. The toxicity of the high-dose chemotherapy causes the patient's immune system to be completely wiped out. The transplant allows the patient to recover after that happens.

In the past, before stem cell transplants, a bone marrow transplant was done instead. This was a much more invasive procedure as the marrow had to be harvested from deep in the hip bone and a lot of marrow was needed. For the stem cell transplant, the cells are collected from the blood and so it's a lot easier.

The preparation for the collection involves a single round of chemotherapy followed by a week of daily Neupogen injections. The chemotherapy is similar in strength to the treatments Kim has already received and is meant to help mobilize the stem cells in her body (ie. get them moving about the blood stream to facilitate collection). The Neupogen helps boost the counts so that there are more cells available to collect.

If all goes well, the mobilization chemo will start Wednesday, and continue on Thursday and Friday (all as out-patient procedures). Then the Neopogen injections will start the following week. They expect that Kim might be ready to have the actual collection done as early as the week of May 30.

While all the prep work for collection is happening, Kim will also go through a whole bunch of examinations to ensure that there are no latent problems anywhere in her body. The doctors would much rather treat and resolve such issues before Kim becomes severely immuno-compromised. She'll get a physical, plus heart and lung tests and even a special dental exam (need to be careful about gum inflammation and cavities and stuff). Anything that could cause an infection later needs to be fixed first.

Once all the crazy pre-amble work is done the collection itself is pretty simple. They take blood out one arm, run it through a machine which filters out the stem cells and then put the blood back in the other arm. It can be a lengthy procedure though and Kim may have to come in more than one day to complete it.

After the collection is complete, they wait until Kim recovers enough from the mobilization chemo and then admit her to PMH as an in-patient. Then they give the extremely high-dose chemotherapy and a few days later introduce the stem cells collected earlier. Finally they keep her for at least two more weeks until she has recovered enough immune system function to go back out into the world. The hope is that it could be done by the end of June.

Again, this is all still tentative pending the results of the CT scan on Tuesday. They had us come in before the results so that we would know what to expect so that they can move quickly when they're ready.

We're pretty anxious to find out what will happen!

Kim finished up the second part of her second round of salvage chemo on Friday. It went much faster than last time and she's still feeling OK. Next Friday we have our first meeting with the people from Princess Margaret to start learning about all the stuff that will happen with the Stem Cell Transplant. The following week Kim will get a bunch of tests done to determine if the salvage chemo has been successful enough to proceed with the transplant and if not they will give her another couple rounds of chemo before testing again. All the waiting is very hard.

Thursday was Kim's 29th birthday and obviously we kept things pretty low-key. I did bring home her favourite Gandhi Roti for supper though, and we took a short walk to the local Gelateria for some delicious gelato.

Kim's home care nurse taught me how to flush her PICC line and I've been doing it successfully for about over a week. Then, this Saturday I wasn't able to flush it anymore, it was stuck. The nurse came right away and was able to flush it using special magic of some sort. On Sunday I tried again to flush it and was only able to flush one of the two lines. Since I was able to do one the nurse felt it would be OK to wait until Monday to visit again. However, when she came today she was unable to flush either line.

So I took Kim into the cancer clinic at the hospital and they told us the line was done. It's nobody's fault, it just happens sometimes. It's not the end of the world since she only has the one small treatment left this Friday which they can do by normal IV.

Anyway, everything is fine, and now Kim can take showers without worrying about getting her arm wet.

On Friday Kim received the first part of her second round of salvage chemotherapy (R-GDP). It took a lot longer than the old R-CHOP protocol, but by 6pm we were out and on our way home. Kim's been feeling mostly OK this weekend so that is nice.

This coming Friday Kim will get the second half of the treatment and then a week or so after that she will go in for a CT scan to determine how well it is all working. If there is significant enough progress she will hopefully proceed to the stem cell transplant at Princess Margaret, otherwise they will do one or two more rounds of the R-GDP and we'll see how things are after that.

The leaves are finally coming out on the tree in our front yard and that plus the warmer weather has definitely improved my mood. Soon I can put away my jacket for the summer and things will be very happy indeed.

Kim received the second part of her first round of salvage chemotherapy yesterday. It went pretty well other than taking longer than expected due to the cancer clinic being a bit swamped. The second part is just an additional dose of gemcitabine which is not as harsh as the other stuff.

Kim's home care nurse has been great so far, coming every day to flush Kim's PICC line to keep it operational. Normally they don't flush it every day, but it was giving them some trouble in the hospital so for now they're being safe. The nurse is teaching me to flush it (it's not very hard) so that she doesn't need to come every day.

Although this treatment is stronger and Kim has been feeling the side-effects more she is still doing pretty well. Last week definitely wasn't so great, but nothing like the horror stories you hear sometimes. She's developed a little bit of a cold in the past couple days, but there's no fever so there's not much to worry about. Just something she needs to wait to resolve itself.

The doctors decided today that Kim was healthy enough to be released so we're all back at home now! Yay! A home care nurse is going to come visit us regularly to help maintain Kim's PICC line and also just to monitor her for any problems.