Friday, October 30, 2009

Update - 10/30

2 weeks down, 4 to go!!

Cambell completed her first 10 radiation treatments this week. The second week went as smoothly as it possibly could. The only catch was that they had a problem getting her blood drawn and had to send her over to Childrens Hospital. Once over there, they were able to get it without a problem so there is not a problem with the PICC line..whew....

On Thursday, they had trick-or-treating for the kids throughout the hospital. Campbell finished her day with some arts and crafts and ended up with quite the loot at the end of the day.

After Campbell and Robin arrive on Sunday night, Greg and the girls will follow them up on Teusday. This will give the girls a chance to see the facility and we can all spend some much needed time together as a family.

Only 20 more treatments and then this will all be behind her...

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Sunday, October 25, 2009

Update - 10/25

Our apolgoies for not getting an update up since Wednesday....

Campbell came through the radiation treatments on Thursday and Friday amazingly well! We were actually able to take a walk to Boston Common (the park) and see the ducks from "Make Way for Ducklings" and have a picnic. Unfortunately, it didn't appear that the swan boats were running anymore so we will have to make a trip back in the spring to do that.

They took her in early on Friday as they had a cancellation. Unfortunately, one of the other little boys being treated was admitted for surgery :( Fridays are "prize days" for the kids as they get to choose something out of the toy closet at the end of every week. The closet is amazing and Cam was really excited about picking her puzzle. She also got to choose something out of the "sibling" closet for her sisters. They really do everything right up there (except baseball of course...) The positive side of all this is that we got to get on the road that much earlier and get home that much earlier to see the other girls. Caroline was so excited to see Cam when she got off of the bus!!!!

We had an uneventful weekend and today Robin and her mom will head back to Boston for week 2. We are praying that it goes as well as the end of week 1!

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Wednesday, October 21, 2009

Update - 10/21

Cam started her radiation treatment on Monday up here in Boston. The three of us came up on Sunday evening so that we could be here bright and early Monday morning.

The process could not have been smoother. Campbell was excited to get back and see Nurse Rachel and was happy to go back into the "Monkey Room" where she receives the treatment (it's decorated with monkeys - unfortunately, most decked out in various Boston sports teams apparel). Because it was the first day, we were both allowed to go back with her - which provided as much comfort to us as it did for her.

Once they took her back, they almost immediately gave her the propofol and she was out. About 45 minutes later she was awake again and we were able to go back and be with her. It is pretty amazing how effecient they are. She was actually sitting up and eating some cookies when we got back to the room on Monday and was HAPPY!

While she was having her treatment, we met with Dr MacDonald and Dr McBride to review her treatment and to see the "field" that they would be treating. It appears that her right inner ear will be able to be avoided completely and MOST of her left as well. In addition, both of the hormonal centers in her brain will be avoided as well. If we were optimistic that the side effects would be minimal before, now that we saw these pictures (superimposed onto the pictures from the CT scan) we are that much more encouraged. We are still expecting some hearing loss in her left ear, but the extent of it may be minimized.

After some lunch, Campbell decided that she was going to throw up for a while. This made us both very nervous. When this continued for over an hour, we called the nurse and she ordered some Zofran. They had not given her anything with the anasthesia so that they could get a baseline as to how she would react (that would have been nice to know ahead of time) but will going forward.

On Day 2, she gave her the Zofran so we were optimistic about her not throwing up, but she still did - though not as often or for as long. Because they had given her the full dose of Zofran while she was sedated, they couldn't give more but Benadryl is also an anti-nausea medication so we ran to Rite-Aid to get that for the next treatments. The hope is that we come up with the right "recipe" to keep her feeling good. Because she isn't feeling well, she is not eating lunch which may be compounding the problem as well.

We'll now see what Day 3 brings but hope that we all are getting into a routine with this. Thank goodness it has not yet been a fight to get Cam to go there and about eating. Once we have to start fighting with her about that, it is a whole new ballgame.

Thanks to so many of you for your words of encouragment for this new adventureand support with the other girls back home. We love you all very much and could not imagine doing this without you

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Saturday, October 17, 2009

Update - 10/17

After a quick trip to Boston on Friday afternoon for an MRI (quick if you consider the 11 hours in the car "quick"), we are ready to go back tomorrow evening so that Cam can be there at 9:15 Monday morning to start her radiation treatments.

We also got a call from one of the oncology team in Boston who, after much discussion with infections disease doctors, decided that after Cam finishes her current course of antibiotics through the IV, she will continue on antibiotics during her radiation with a liquid she will take twice a day by mouth. They want to be sure that stopping the medicine now does not allow the infection to come back and delay anything with her treatments.

Otherwise, we are ready to go. We are eager to get this started so that she can get this behind her as quickly as possible.

Thank you to everyone for all of the support you have provided us with up to this point. We are truly grateful.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Tuesday, October 13, 2009

Update - 10/13

Cam had a great weekend! If you didn't know she was sick you would not have been able to tell based on her behavior. She even made it for firetruck rides on Sunday ! We are all so relieved to see her acting so much like herself while we prepare for next week.

Friday starts the next phase in her treatment and we are praying that all goes according to plan and that the potential side effects are avoided as much as possible. At this point, if we expect the worst but pray for the best, we can only be pleasantly surprised, right?

The only surpise that we got this weekend was yesterday when the Home Health Care company that is providing her medication called to drop off additional antibiotics...we thought she was done as of yesterday and none of the doctors had let us know of the change. After speaking with the nuero-oncologist up in Boston, he told us that no one was very comfortable treating the infection on the conservative side was the best idea. So, Cam will continue on the IV medicine until the 20th of October (which comes out to about 6 weeks). She has tolerated it just fine - her parents on the other hand aren't big fans of the weekend 6am wake up call...

Your prayers have brought her this far, please keep them coming.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Saturday, October 10, 2009

Update - 10/9

No news is good news.

Cam continues to make improvement every day. She had a visit to the park on Thursday afternoon exactly 7 weeks after being diagnosed. We hope and pray that the worst is behind her now.

The radiation treatments will begin on Monday, Oct 19th up in Boston. We got a chance to see the proton beam equipment on Tuesday while we were there and it is AWESOME. There are 2 rooms with the machines that actually shape the beams and one cyclotron. Each machine is 3 stories high and looks like something out of Star Wars. Campbell will be sedated for the treatments so she does not move at all. Each one will take approximately 30 minutes but when you add in the sedation it will be most likely at 2 - 3 hour event.

She will receive treatments Monday - Friday for 6 weeks (or 30 treatments). When you pad this a little for holidays (Thanksgiving and Verterans Day are in there) and allow for the machine to breakdown (which we understand it does do from time to time) that will have her finished by the first week in December. During the treatments she will continue to be seen by the radiation oncologist (MGH) and neuro-oncologist from Childrens Hospital. They will also stay in constant communication with the other doctors both in Boston and at home to keep them filled in as to what is going on. It is such a relief to have her care managed so well right now. No doubt she is going to have this all behind her before we know it.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Wednesday, October 7, 2009

Update - 10/7

Yesterday's visit to the Proton Beam Center was, simply put, AMAZING! The people were absolutely wonderful and so good to Cam. The entire experience put our minds at ease as to whether or not we were doing the right thing.

Today, she will have the CT simulation and we will meet again with the team of doctors/technicians/nurses that will be caring for her during the treatment. This meeting will discuss further the process, side effects, timeline, etc. for her both immediate and long term.

As difficult as it will be for us all to be separated for the next 4 - 6 weeks, we are sure that this is the best treatment plan for Campbell with the most optimistic results. The chance of regrowth of the tumor is only 20% using this treatment - 80% is a REALLY good number for anyone. When you add in the prayers and positive thoughts and support she continues to receive, there is no doubt that her success rate will be much higher.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Monday, October 5, 2009

Update - 10/5

Cam had a good morning this morning and a not so good afternoon as her vomiting returned. We are hoping that it was because she slept through her dose of pepcid yesterday. We spoke with the neuro-oncologist today and since we are going to Boston TOMORROW anyway, she was content to watch and see since there was no fever associated with it (or at least very low grade).

The visit tomorrow was a last minute change to our schedule which we did not expect. We got a call from Dr MacDonald- the radiation oncologist - (add her to the list of doctors caring for Cam) who wanted to get some of the preparation appointments out of the way so that Cam could start the radiation treatment as soon as possible. This is good news as the sooner she starts the better the results. So we will meet tomorrow early afternoon with the anasthesiologist and one of the nurses at Mass General Hospital. She will then have a CT simulation on Wednesday morning. This is a simulation of the treatment that she will get but with no radiation involved. They will then use this to map into the machine her treatment, location of radiation dose, etc. It's pretty high tech and intimidating stuff but they treat many patients with this and the results thus far have been positive. The protons slow down faster than the normal photons and the hope is that the side effects and damage to surrounding organs/tissues is minimized - which is really good especially if you are radiating the brain of a 3 year old. The potential upside was enough to sell us on it.

Then on Wednesday afternoon we will meet with Dr MacDonald to have a more in depth discussion of the treatment, side effects, schedules and time lines. This is going to be a VERY difficult discussion as it will no doubt be much of the worst case scenarios.

Yesterday's Ride for the Cure was a huge success! We continue to be amazed by the generosity of our family and friends. Thank you to everyone who came out to support Cam - EMS Angels MC and their fellow clubs, Bernardsville Fire, Bernardsville HS (thank you Scott Gunderson for your work), our family and friends...the list goes on and on and we can never thank you all enough. We are truly blessed to have you all in our lives.

With Love from HOME,

Greg, Robin, Caitlin, Caroline & Cam

Friday, October 2, 2009

Update - 10/2

SHE'S HOME!!!!!!!!

We left Childrens Hospital this morning around 10am and were home by 2:30 with no traffic...maybe our luck is changing....

She had her first dose of antibiotic through her PIC line this afternoon around 4:15 with the home care nurse here to ensure that all of the supplies had arrived and to review with us again what needed to be done.

Caitlin and Caroline are so happy to have her home and we are really pleased to all be under the same roof again.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Thursday, October 1, 2009

Update #2 - 10/1

Campbell is scheduled to be discharged tomorrow morning!!!! We were able to see the home care representative this afternoon - after some concern that they would not be available until tomorrow afternoon. The antibiotic and other miscellaneous equipment for Cam is going to be delivered to the house tomorrow afternoon.

Cam remainder fever free all day today and her eye exam was perfectly normal. Her transfusion was also uneventful - which is really good.

Discharge should be early in the AM! Then we will be back next week for our meeting with the radiation oncologist Thank you all for your encouragement and prayers.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 10/1

Happy October everyone!

Despite the 2 vomiting episodes last night, Cam still remains fever free. The doctors are still not concerned and seem to think that the vomiting was stress related. The transfusion will be done after her eye appointment this afternoon and will go late into the evening - not a big deal for her other than the fact she will need to be "plugged in" for a while. Assuming there are no complications with the transfusion, we will be busting out of here tomorrow!

BTW, if anyone spots September laying around, we were wondering where it went...

With Love,

Greg, Robin, Caitlin, Caroline & Campbell