Thursday, June 28, 2007

Holy Meds!

Kate's medications for this phase are a little confusing and I actually had to buy a pill organizer to keep it all straight. It is hard because some are daily, some are twice daily, some are M,T,W only, some are weekly and others only monthly. They have to be given on the correct day (of course) so hopefully we'll keep it all straight! For this phase her medications are as follows:
Every day in the evening oral chemotherapy (6-MP)
Twice daily acid blocker (Zantac)
Three days a week, twice a day, antibiotic (Bactrim)
Once a month 5 day pulse of twice daily steroids (Decadron) starting today
Every Thursday oral methotrexate
Once a month spinal tap with intrathecal methotrexate
Once a month IV chemotherapy (Vincristine)
Kate has become quite proficient at swallowing pills and today took all 6 methotrexate tablets without a problem. We've come a long way in two months!

Accessing the Port

I brought my camera to the clinic today so that I could capture the process of accessing Kate's port. I think it might have been the wrong day for it though. We had a 10:15 appointment and drove around the parking garage for a full half hour trying to find a spot. Finally, I gave up and found a valet parking in a nearby building. We arrived at the clinic 30 minutes late and finally made it back to the room an hour and a half after our appointment. The lab had some complications and we couldn't get started without the bloodwork and that further delay threw a monkey wrench in our usual routine. On a normal day Kate isn't at all bothered by the poke through her port so I felt terrible when through the lens I saw her crying!Here are a few pics of the process...

Waiting to access the port

Every day before we go to the clinic, we put "magic cream" (EMLA) on Kate's port site. That way, it doesn't hurt when they poke through her skin to get to the port. Even though it doesn't hurt, Kate still doesn't enjoy the initial stick so she looks away.

That isn't supposed to hurt!

We put cream on her port at 8:30 in the morning. Due to all of the delays, her port wasn't accessed until 1:15 and I think the numbing effects had worn off by then! Now we know for next time...

Helping to flush her port

Kate loves to be a helper and the nurses let her flush her port before they de-access her. Although she was shocked and upset by the poke she was quick to forgive and help finish up the process.

Saturday, June 23, 2007

Two Months

Today marks the 2 month anniversary of Kate's diagnosis of leukemia. I can't believe that it was only two months ago that she became ill because it feels considerably longer than that! I certainly never could have imagined that this is what 2007 held in store for us either. In any case, Kate, Jackson, Ava, Jason and I are mostly handling it well. There are definitely bad days but everyone has those, right?
Next Thursday will start her 8 week phase of chemotherapy called interim maintenance. This should be a relatively easy phase of treatment and will be a nice way to spend the rest of the summer.
Another nice way will be to decorate her room! That is going to be our challenge for the next 2 weeks so we'll see what we can get done. Of course I'll be sure to post pictures when it is completed. :)

Wednesday, June 20, 2007

Cute Story

Kate swam 2 races at last night's swim meet, freestyle and freestyle relay. (By the way, this was an unbelieveably close meet that our team won by 1 point! Go Barracudas!!!) Back to the story... Kate hopped out of the water after her last race and was beaming. She said, "Mom, do you know that I was smiling under the water the whole time when I was swimming?" When I asked her why she was smiling she said, "Because I was so proud of myself". So are we, Kate. So are we!!!

Monday, June 18, 2007

A Week Off

My Mom arrived last Wednesday to help out while I worked for a week. I have worked 4 days in a row and have 2 to go. I think that things have been going very smoothly too. She's been taking the kids to the pool, helping me organize the playroom and get my act together. What a lifesaver our families have been!
Kate's last fever was a week ago and she is feeling well other than a cough and runny nose. Her hair is falling out more now too, but it is doing so in an even distribution so it appears just thinner and thinner. Every time Kate wakes up her t-shirt is covered in hair but she doesn't even notice.
This is a special week because Kate doesn't have to go to the hospital for any procedure or IV chemo -- whoo-hoo!!!! This is Kate's last week of consolidation and next week begins a new phase called interim maintainence. The next phase is a relatively easy one that will last for 8 weeks. So, as a wonderful treat, we get a week off between the end of this phase and beginning of next. Kate is especially excited about her week of no doctor visits and reminds me daily that she doesn't have to go this week. Life is good.

Monday, June 11, 2007

Kisses for Kate

Sweet note from supportive friends!

Out of focus but you get the idea...

Jackson, Kate and Carolyn

Since Kate's diagnosis, we have been overwhelmed by the sincere acts of kindness that our family has been shown. There is no way to enumerate all of the things that have been done on our behalf (although I have tried to keep track!). It seems that someone calls, brings us a meal, sends a gift to Kate, remembers to think of Jackson, runs an errand for us, writes a note of encouragement or gives me a hug just when I need it. When we are feeling weak these things help to strengthen us and help us to press on.
One of our dearest friends sent us a gift today that made me cry. They had pink bracelets made for us and our friends and family that say, "Kisses for Kate". Our friends, The Worthens, are going to wear them until Kate is cured and so are we! If any of you would like to have one let me know and I'll get them to you.

Monday, June 4, 2007

First Fever

Kate had her first fever which landed us in the ER yesterday. I was working in another ER when Jason called and told me she had over a 102 temperature. Kate had been complaining of her stomach hurting and her head hurting as well as feeling cold today but she really didn't seem too bad until the evening. In fact, we celebrated Kate and Ava's birthdays earlier in the day and she even jumped on her new trampoline. Apparently after I left for work, she began complaining more about the chills and they took her temperature and discovered the fever. She hadn't felt warm to me earlier so we hadn't even checked. Unfortunately, there is no gray area with a febrile child with leukemia. The have to go to the ER for blood work, blood cultures and antbiotics if their fever is 101 or higher.
By the time I got home and took Kate to the ER she had nearly a 103 temperature and was feeling pretty yucky. I had spoken with the Heme/Onc physician on-call who told me to pack a bag because she'd be admitted. The ER was slammed (of course) and we had to wait a while to get the ball rolling on the lab work. We'd brought some books on tape which was a great diversion for Kate and in truth, she handled the wait better than I did. Our doctor was worried that her ANC would be under 500 and that she need to stay for antibiotics but it was amazingly high at 4000 and we didn't have to stay! The current theory is that she has a viral process going on and that her body will be able to fight it. They covered her anyway with IV Rocephin and we left to go home and sleep in our own beds - yea! I hope we don't have too many repeat performances of last night...

Sunday, June 3, 2007

Consolidation Crying

Kate's new phase of chemotherapy, Consolidation, began on Thursday the 31st of May. It was a rough doctor visit. Kate had a lumbar puncture with intrathecal methotrexate planned so she wasn't allowed to eat all morning. We arrived at 10:45 and made it back to the room at about 11:30. First, we signed the forms to particpate in the medical study for treating ALL and then we were randomized in the study. Kate was randomized into the standard treatment arm of the protocol. That means that she was assigned the same treatment that she would have been given if she hadn't participated in the study. (It is what all children with standard-low risk pre-B ALL receive.) The other possibilities would have required more injections of another chemotherapy agent along the way. The researchers are trying to ascertain whether adding more doses of another medication will give a better cure rate. Enough of that...Kate will not be getting the extra medications.
So when all of the paperwork was done they tried to access Kate's port but found that there was a clot in the port. They tried to dissolve the clot with heparin (twice) and then a clot busting medication called TPA. After 2 and 1/2 more hours of waiting for the medication to work on her port (and of Kate asking me 100 times when when she'll be getting her sleepy medicine so that she can eat) she finally cried herself to sleep on the stretcher. Needless to say, that was pretty hard to watch her have to endure.
The medication finally dissolved the clot and her port worked so she could receive her chemotherapy. They gave her the sedating medications, Versed and Fentanyl, and that too was a lot of drama. Kate has been having a harder time each week with the Versed and as a side effect she cries uncontrollably. Picture a starving, crying and inconsolable 5 year old being forced to lay flat for 30 minutes after the lumbar puncture. Not fun! She was having such a hard time that they gave her a reversal agent for the sedation and she did finally calm down a bit. They are going to try different sedating medications next week and see if they can make the experience easier for Kate. It was a heart wrenching day for her and I. I am so grateful for my dear friends who were watching Jackson and Ava so that I could give my undevoted attention to Kate and be there to help her through the process. We couldn't do this without our friends!
For the consolidation phase of treatment Kate is on daily oral chemotherapy, antibiotics and an acid blocker. She receives a lumbar puncture each week with intrathecal methotrexate and gets IV chemo once a month. Her hair is thinning more each day and we are seeing a lot more of her scalp but it is hanging in there. Amazingly, Kate is still smiling, mostly happy and wanting to go to the pool!