Courage for Kennedy – Journal


January 26, 2008

Just another day in paradise…

Category: Treatment – Melenie 10:53 pm

Well, here comes the rain again…sounds familiar. We had several days of dry but very cold weather so it was nice to have the mud return to solid ground. Now, though, the rain has begun and once again returned our place to a giant mud hole where boots get stuck and the my kitchen floor goes from white to red in a few hours. Ugh!

Ok, enough whining!

On the Kennedy front though things are going along at their normal pace. Her incision has healed remarkably well and I will be giving Dr. Bliss (yes, that is really his name) a call and letting him know about her progress. He said that if it looked well (no bleeding, oozing, swelling, redness or fever) there was simply no reason to return to his office only to have him look at it and say, “yep, looks great!” I agree and so on Monday I will let them know just how beautiful it is. Kennedy will have a scar on her chest but in the grand scheme of things…not really a big deal.

At her oncologist’s urging, we are returning to therapy. We have had a nice break but it is time to get back to business. She was supposed to have a language eval on Wednesday but that is the day she spends with her new tutor and I have school, so it looks as if I’ll have to reschedule that one. I was hoping to make it work but scheduling has been impossible. Friday, however, we are still working on for her OT eval. Please cross your fingers that that one will come together as the further we push it out the longer she must wait…ok, that seems obvious…not sure why I said that! Her PT eval and leg recasting (for braces) is not until March but the scheduler said her PT would call us next week and perhaps she will be able to work us in sooner. Kennedy is excited to see her therapists again (she does love them dearly) but I am concerned about how I will add all of this to the already crazy schedule. As with most things, it will come together and work out. There is a good possiblity that her PT and OT can be scheduled on the same afternoon and her LST (language and speech therapy) can be scheduled for one of the days I am off school. Please pray that it all works out. What with my school, homeschooling, tutoring, ballet, classes at the academy and normal, everyday stuff (housework, animals, etc.) it can be difficult to add to the bunch.

So, yes, Kennedy will be seeing a tutor in addition to her other crazy things. We could not have asked for a more amazing lady to come along! She is creative, warm, friendly, very intellengent and understands Kennedy’s challenges. In addition, she tutors several other elementary age girls on the same days as Kennedy including her daughter. What fun for Kenne! I needed some additional help with Kennedy and she has some wonderful ideas that will give us a new approach. Somedays in reading it feels as if I am banging my head against a brick wall…a new outlook and perspective will help. She is just wonderful and both Kennedy and I are very excited! She also let us know about some classes in Oregon City that were open to homeschoolers so we are looking to take advantage of that. We should know for sure Tuesday as some classes were full already but they were going to ask the instructors about adding Austin or Kennedy, depending on the class. This will be a fun opportunity for them to have a classroom experience.

Hmm…let’s see…oh, they tested Kennedy to see if she has retained her immunities to chicken pox, hepatitis B and tetanus at her last appointment…intensive chemo can actually destroy some immunities although it is more common with bone marrow transplants. We suspected that she may have one that was lost and perhaps one that was right under the line but it turned out that she lost all of those. Her numbers were something like 0.01 when they needed to be over 1. Not good for her as she can not have any immunizations till at least August, preferably October. Now, they would like to discuss possibly testing for other immunities that could have been destroyed as well. Needless to say, this puts us on edge. She has NOT been told so please do not spill the beans as she is already anxious about the fact that she is behind on immunizations…she ONLY knows this because at her well child check-up the nurse began to discuss the immunizations she needed and when I told them she could not have any for 1 year Kennedy was sitting right there. The thought of having to have several more (including the Hep B series) will only stress her out more.

They are still examining the Charcot Marie Toothe Syndrome idea. Not sure yet what is happening there…

Other than that? Things are just busy.

Please continue to pray for Gage. It sounds like the doctors are anticipating a Ewings recurrence and planning accordingly. Many difficult decisions lie ahead for the Dole family so prayer for wisdom and guidance are crucial.

Love-Hope-Faith-Courage,
Mel

January 17, 2008

Please pray for Gage

Category: Treatment – Melenie 10:48 pm

If you have been a reader of this blog for very long, you know about Gage.

He was treated for Ewing’s Sarcoma while Kennedy was in intensive treatment and we had the opportunity on more than one occasion to get to know him and his mom (and his dad sometimes) through being inpatient, the DTX and in the clinic. After successfully going in to remission, 6 months post treatment he was diagnosed with treatment induced AML (another form of leukemia than Kenne’s) was needed a bone marrow transplant. He again beat cancer and seemed to be doing well. However, today, during routine scans, a mass was found in the original location of his Ewing’s Sarcoma. This is NOT good. While there is a very slim possiblity it is benign, that is not likely. They are actually hoping that if it is cancerous, that it will be lymphoma (treatable by surgery and chemotherapy, right Devon?) and not a recurrence of Ewing’s which has a poor prognosis. Surgery will determine what the next step is.

Please join us in praying for Gage and his family and I encourage you to visit his website here.

Faith is believing in things when common sense tells you not to. ~George Seaton

Things are going great!

Category: Treatment – Melenie 1:25 pm

Sorry for the lack of update after surgery. Kennedy was such a trooper and we are so proud of her! There was a bit of confusion about where we were supposed to be (apparently they had scheduled her for DTX at 8am but no one called us and we went to short stay at 9am like we were told.) It worked out but it would have been easier to be there at 8am and get her Pentamadine done before surgery. Everything came together though and it was fine!

The surgical nurses went on and on about how mature she was…more like a teenager really. She wasn’t worried or anxious and acted like the whole thing was no big deal. We’ve been discussing the port coming out for some time so she was now comfortable with the idea and being sedated is old hat for her so she didn’t much worry about that either.

However, Kennedy has developed a horrible sensitivity to any kind of tape (doesn’t even have to be latex) and where the monitors were attached the skin was really eaten up…and they were only on for 20 minutes. They could not believe it. So, rather than add any more insult to injury, they taped her incision closed. They already had to tape an IV to her hand so they figured the less they had to do the better. Her skin recovered and looks much better.

The first few days she couldn’t stand to look at her incision. She would close her eyes when changing and only where shirts that did not allow for her to see it. Gradually as the redness and swelling went down she felt better about it and was ready to take a bath without freaking in 3 days. It looks great now and the glue is doing a fantastic job with no irritation to her skin.

On a fun note, Friday when Keith was home (he was able to have Thursday and Friday off) she was riding Champ bareback and came in to tell me her hair was blowing on her face and she loved it! She has not had hair in her face for over 2 years! She said it felt so good 🙂 Nothing could have made me happier at that moment.

Well, I have returned to school…ugh! Back to the grind! Better get crackin’ on that homework!!

Mel

January 7, 2008

Surgery on Thursday

Category: Treatment – Melenie 11:10 pm

We met with the nurse practioner today to go over Kennedy’s surgery on Thursday…basically we drove an hour, waited 50 minutes for about a 10 minute appointment. Ugh! They didn’t even do blood work, odd for us after the fact that every single appointment she has had at Emanuel for the last 2+ years has required a port access and blood work.

She basically let us know what is involved in a port removal (not much) and that Kennedy would be down in surgery approximately an hour then when she woke up they would be taking her to the Day Treatment Unit (DTU) for meeting with the oncologist and get her last dose of Pentamadine (antibiotic that she has had to have infused every month since her diagnosis). Woo Hoo!

Kennedy was feeling better about the idea but is still apprehensive (as I would expect her to be). The NP told her that Dr. Bliss would let her have her port if she wanted it…of course, Kennedy said yes! Silly kid! This is also the same kid that insisted on keeping her radiation mask and actually wants to paint it and make it in to something…like a lamp. I just don’t understand where she gets these ideas!

Wow…this is like the last step to a “cancer” free life. My last security blanket. Hmmm…

Please pray for no complications, no infections and freedom from anxiety for mom.

Hope-Courage-Faith,
Mel

January 5, 2008

We’re Finally Back!!

Category: Treatment – Melenie 9:12 pm

Oh, to be writing again! How good it feels!

I apologize as I think this is the longest I have been away from writing on Kennedy’s site ever. We changed internet providers (no dial up for us! Oh, no…we are in the 21st century, baby!) and when that happened I somehow lost my password to Kenne’s site. I had just stayed on and not logged out and when I went back after changing, I could not for the life of me remember the password. My dear friend, Becky, is the administrator and we have both had such full plates the last few months that we never got in touch to get it fixed…but guess what, it is fixed now!!!

Wow! What have we been up to? Well, we finished rodeo season, Kennedy had a birthday, our niece, Devon, finished up chemotherapy and radiation, we had a great Thanksgiving and Christmas, Austin turned 11, we had soccer season, I went back to school, Kennedy returned to ballet and danced in the Nutcracker, we got 2 new baby horses (Hope and Running Deer)…and I’m sure there is much more.

Let’s see…how has Kennedy been…pretty good actually. She is handling being off treatment much better than I am. She LOVES not taking pills and her hair is growing so fast. I just have lots of anxiety about her leukemia returning now that she is not taking any more chemo or I worry about the long term effects (learning disablities, brain tumors, secondary cancers, cataracts and optic nerve damage, walking issues, reproductive health, heart damage, her liver, balance and coordination, etc.) However, for the most part…she is doing most excellent. True, she does have some issues with learning disabilites (especially with her ability to process information which is becoming most evident as she is learning to read), issues with fine motor skills and large motor skills (walking, dancing, running, balance, coordination). In fact, the topic of having her tested for Charcot Marie Toothe Syndrome has been discussed again as Kennedy is having no sign of returning reflexes and the nerve damage in her legs and feet is no improving…it even appears that other issues are showing up such as the fact that her left foot seems to be turning in ward. Her leg braces are too small but we are stretched financially and having a hard time figuring out how to afford new ones. Thank goodness it is almost time for our income tax returns although it is not how we intended to spend it. Cancer wise she is doing very good. Her counts and bone marrow are recovering and her immune system is at about 60% now. We will be checking what immunities she still has from her vaccines although we won’t be able to catch up until next October. She has several that she has already missed so I’m sure she’ll be thrilled about that.

She is growing so fast now, it’s as if she is making up for lost time. Her hair is FINALLY growing and looks great but it is not long enough to put up and too short still to look truly “girlish.” She had a wonderful birthday and was thrilled to have a “real” birthday party this year with bowling, pizza, cake and ice cream, friends and lots of playing and laughter. It was fantastic! She is also still homeschooling and while some days it can be just crazy, she is doing great. We took a break from occupational, physical and language therapy but her oncologist urged us not to take too much time off so that Kennedy does not regress at all. We also had her first post treatment echo and it was normal which was great. They remind us that many of the long term effects (brain tumors, heart damage, cataracts, etc.) will not show up for some time. She still has to see the Opthamologist but she hates it so I have put it off…guess I’ll have to get on that. For the most part…it is all good for her. It’s so great to see her feeling “normal” again.

So, it’s back to ballet. She performed in the Nutcracker in December and loved being both a mouse and little snow. The rehearsals and crazy schedule were exhausting but she enjoyed most of it. She did have one hard night where she just could not seem remember what she was supposed to be doing (having 2 parts was very difficult) and just got yelled at by the director the whole time. She held it together at rehearsal but the minute we hit the car she was bawling. I felt so bad and almost pulled her but realized that it is really a learning part of life and she did recover. Not only that, but she went over her parts again and again and did just beautifully in the performance. It was difficult for her to process so much and then remember all of it especially if someone else did not do their part. She had identified clues around her to remember and when someone messed up it confused her. She had a hard time keeping up on some parts but I know she did her best and after the one bad night, the director realized she was truly working as hard as possible.

Let’s see…mostly we have just been crazy busy. I returned to school and can not wait for it to be over. My heart just isn’t in it anymore.

Well, there are dishes to do and kids to run to bed…hopefully now, though, this will be updated more frequently than every 4 months!

Oh, how could I forget! Kennedy has surgery on Thursday, January 10th to have her port-a-cath removed. Please pray for her as she is not happy about this at all. She had her port put in when she was just 4 and truly believes it is part of her body. As far as she is concerned, we might as well cut off her arm! I know she will be fine once it is over but for now it is hard. Devon has her’s out on Monday so hopefully that will help Kennedy. Also, as she is still seeing the oncologist once a month (checking for recurrence) for the first year, she is not happy about having the blood drawn from her arm instead of her port. We will continue with the Emla cream so that should make the transition easier. Oh, and we had 2 ER visits recently. Not for anything big, she had a fever (b/c of her port we had to go) and for vomiting. Turned out just to be a bug both times.

We hope you all had a Merry Christmas and we are praying for a marvelous new year!

Mel

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