Prayers and Pixie dust needed for my 4 year old **update pg 9**

[TMcDwyer]

Praying for you today!

 

[Jennygt]

We had a good day at CHOP. MD is confident that the tumor is not malignant. He still wants to do a biopsy, and possible scraping of the tumor if indicated. We are very happy, this is the least invasive we could have hoped for and that major reconstruction and bone grafting is not indicated. We have not scheduled this yet. CHOP was wonderful and my DD did well with her grandmother ok and survived drinking a bottle of formula. Johnathon is playng in the sprinkler right now with dad, DD sleeping in her swing and I think I need to take a nap myself. Thanks so much everyone!!!!! I will be sure to keep you updated!

 

[roomthreeseventeen]

We had a good day at CHOP. MD is confident that the tumor is not malignant. He still wants to do a biopsy, and possible scraping of the tumor if indicated. We are very happy, this is the least invasive we could have hoped for and that major reconstruction and bone grafting is not indicated. We have not scheduled this yet. CHOP was wonderful and my DD did well with her grandmother ok and survived drinking a bottle of formula. Johnathon is playng in the sprinkler right now with dad, DD sleeping in her swing and I think I need to take a nap myself. Thanks so much everyone!!!!! I will be sure to keep you updated!

Way to go Johnathon! :

 

[TMcDwyer]

We had a good day at CHOP. MD is confident that the tumor is not malignant. He still wants to do a biopsy, and possible scraping of the tumor if indicated. We are very happy, this is the least invasive we could have hoped for and that major reconstruction and bone grafting is not indicated. We have not scheduled this yet. CHOP was wonderful and my DD did well with her grandmother ok and survived drinking a bottle of formula. Johnathon is playng in the sprinkler right now with dad, DD sleeping in her swing and I think I need to take a nap myself. Thanks so much everyone!!!!! I will be sure to keep you updated!

It sounds like you got great news! I am so thrilled for you and your family!

 

[parrotheadlois]

so happy for you!

 

[Nancy F]

So glad! Please keep us posted.
God Bless,
Nancy

 

[pklein09]

Wonderful news!!!

 

[SamSam]

So happy for you and your family...please do keep us updated.

 

[PinkBudgie]

Thanks for the update. I've been praying for your little boy. I'm glad it is looking good.

 

[nonnasally]

Thanks for the update. I've been praying for your little boy. I'm glad it is looking good.

Joyful news! Johnathan is being prayed for by the entire parish. Didn't have a last name so I put down Johnathan Boards ( get it?) Humor and prayers -- best medicine around! Enjoy the weekend, filled with peaceful calm!!!

 

[SGB13]

So happy for your news! More prayers for more happy news coming to you.

 

[disneyholic family]

great news!!
thanks for the update and please do let us know how things are going!!

 

[dmccarty]

Glad to hear things are going well. I wish I had seen this thread earlier.

Our two kids have had multiple surgeries over the years. It is not fun. It %^&*( sucks. But at least they CAN be treated. For which I am VERY thankful. Thankfully, our kids problems have been fixed as best they could be, and while cancer was a risk in one kid, over two surgeries, there was none. The waiting is the worst part.

Our kids have always been brave even during some very painful procedures which thankfully they do not remember. We remember and it scars me to this day.

The kids are tougher than the parents. Our kids really hated the IVs. The kids waking up is also been stressful. They would always move around and moan quite a bit so we would have to watch the IVs and O2 sensors.

It had been said but it should be said again. Hospitals, especially Children's hospitals, should be able to help you find near by lodging. One of our local hospitals has a hotel IN the hospital for patients families. I never knew this until we had a family member checked into a room for weeks. There is a Ronald McDonald House near the two Children's Hospitals in my area.

Both Children's Hospitals have very good play areas if the child is going to be in the hospital for a while. One play area is beyond awesome and is simply amazing.

For years I volunteered helping raising money for a local children's hospital. The staff would ask if we wanted to tour the facility. I NEVER wanted to go on the tour. I just did not want see the kids. It just hurts too much to see the really sick kids. Then my kids needed the hospital. I got to know my way around that hospital.

We are so thankful for the hospital and staff. The staff in all of our visits has been wonderful. Bless them, for I could not do what they do every day.

Other people have been through this. Talk to the staff if things are really bothering you. They should be able to help.

Later,
Dan

 

[pal-mickey]

Glad to hear that you got positive news

 

[Jennygt]

Thank you so much everyone for the kind words, prayers and support, it has been such a comfort to me. I think that Johnathons biopsy is going to be July 12, I still have to talk to my work and firm up with CHOP on monday but I think that will be the day. My mom has made arrangements with work so our daughter can stay with her and I know she will tolerate formula if there is an emergency. I am so glad that we can enjoy fathers day, I felt bad for my husband that we might get some horrible news right before fathers day. this will be his first with our daughter. The boys are out shopping, dd is sleeping and I am relaxing on my screen porch listening to the podcast. I will be sure to keep everyone updated.

 

[MomiTo2SwtGuys]

Glad you got good news on your trip! Hope the next trip goes just as well!

 

[disney4dan]

I'm glad you got good news on the recent visit, and wish you continued luck.

You mentioned something in passing about time off from work - having gone through this I am so lucky at how flexible my employer was and I never had to worry about time off so I could be there for 99% of the appointments. I remember the early morning hours of the first surgery at how many Dads were missing from the waiting room. I wondered if a double standard still exists, whether some fathers just can't get time off, whether it is just as difficult for the mother to get the time off. We actually get to "bank" unused vacation time and donate it to co-workers with medical needs.

Sorry to go off topic - just an observation and I hope your employers are supportive.

Thanks to my employer and all the other companies out there who recognize the importance of this and let the parents have time off to be there.

 

[dmccarty]

...

You mentioned something in passing about time off from work - having gone through this I am so lucky at how flexible my employer was and I never had to worry about time off so I could be there for 99% of the appointments. I remember the early morning hours of the first surgery at how many Dads were missing from the waiting room. I wondered if a double standard still exists, whether some fathers just can't get time off, whether it is just as difficult for the mother to get the time off. ....

It could be a double standard, but if there are other kids that require care, or getting to/from school, then mom may be with the child having the procedure.

If family is not nearby to help, if family exists at all, you do what you have to do.

Later,
Dan

 

[Jennygt]

Well the latest is my employer has extended my family leave. I am so relieved one big problem I don't have to worry about. We are heading back to CHOP tues for walker training and to meet with anesthesia, and I would assume labs. Johnathon is aware that he will have to have his "bump" removed and so far seems ok with it. I had to tell him now because I think he would wonder why he was being taught to use a walker. I will be sure to keep updating and again thank you for the support.

 

[TMcDwyer]

I am so glad that your employer is working with you on this so you can focus all your energy on helping your little guy heal. Hugs and Pixie Dust from all of us!!!